dataMSA Survey for Multiple System Atrophy Patient Data Report
03/01/2014-03/01/2019
Number of Participants: 832

Summary:

dataMSA was launched in March 2014 and was closed to participation in March 2019 The purpose of the Survey for Multiple System Atrophy was to collect data and information from individuals, caregivers and loved ones of those lost to MSA for the purpose of promoting research, raising awareness and educating health care providers.

Who is completing this survey?

Person living with MSA

318

38.4%

Caregiver/loved one of an individual currently living with MSA

388

46.8%

Caregiver/loved one of an individual lost to MSA

123

14.8%

Background Information:

In which country/region does/did the individual reside?

Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

4.7%

Region II: New Jersey, New York, Puerto Rico, Virgin Islands

4.8%

Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia

Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N/S Carolina, Tennessee

106

12.8%

Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin

11.8%

Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas

9.2%

Region VII: Iowa, Kansas, Missouri, Nebraska

3.7%

Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming

1.7%

Region IX: Arizona, California, Hawaii, Nevada, Trust Territories

6.4%

Region X: Alaska, Idaho, Oregon, Washington

5.8%

Region XI: Canada

4.6%

Region XII: Central America

0.2%

Region XIII: Asia

1.8%

Region XIV: Africa

1.1%

Region XV: South America

0.1%

Region XVI: Antarctica

0.1%

Region XVII: Europe

10.4%

Region XVIII: Australia (continent), New Zealand

8.7%

What is/was the individual's gender?

male

486

58.6%

female

343

41.4%

Diagnosis Data:

At what age was the individual diagnosed with MSA?

20-25

26-30

0.1%

31-35

0.4%

36-40

1.3%

41-45

3.4%

46-50

51-55

158

19.1%

56-60

179

21.6%

61-65

180

21.7%

66-70

106

12.8%

71-75

7.6%

76-80

1.9%

80 or older

1.1%

With which type of MSA was the individual diagnosed?

MSAc

364

43.9%

MSAp

237

28.6%

uncertain

228

27.5%

How long did it take for the individual to secure a formal diagnosis of MSA?

0-6 months

11.9%

6-12 months

129

15.7%

12-18 months

137

16.6%

18-24 months

110

13.4%

24 or more months

349

42.4%

How many neurologists did the individual consult during the diagnosis process?

116

14%

264

32%

244

29.5%

122

14.8%

5 or more

9.3%

I have not been seen by a neurologist

0.4%

If the individual's diagnosis of MSA was not administered by a neurologist, please state how the diagnosis was formed:

At Vanderbilt by Italo O Biaggioni MD(Clinical Pharmacology)
MRI and other tests
By just looking and DATSCAN
by neurologist
4 years observation
Electro physiologist GP, MD, OD Will be going to Vanderbilt for confirmation Nov 2014
He was yet to be confirmed MSA-P patient, autonomic test left undone, before he died.
I also have had Epilepsy since age of 5. was first diagnosed by a doctor I seen at a MS clinic. Been seeing Neurologists all my life.
My general doctor said "this May be MSA" I'm currently waiting to see a neurologist with MSA experience.
A Physician
Because so little is known in Australia about this disease, it was through my dogged determination as a sister to search for answers & clues that I came across the sites MSA Awareness, Multiple System Atrophy Coalition & MSA Trust UK. The last 2 Neuro's were very non-committal with my suggestion that it could be MSA & up to 7 weeks ago when Maureen passed away her Neuro was still sitting on the fence as to what she had. Maureen ticked every box bar NOH & erectile dysfunction.
N/A
I have cerebellum atrophy, but doctor thinks I have MSA from some of the symptoms I have
Sweat test, vertical table test, CT scans - Mayo Clinic.
Our GP diagnosed it after I complained that the consultants took a very narrow view of their own specialty and did not look at the whole picture
MRI and symptom Review by neurologist.
She stayed in hospital in the research section for 6 months before they found the answer
Cleveland Clinic, Multiple doctors, starting with her Oncologist in the Brain Tumor Institute, followed by several specialists at the Mellen Center, and finally by the movement specialists.
Went to mayo clinic after 3 and half years of being told it was Parkinson’s.
My brother's best friend since university is a geriatric specialist in Virginia. He was the one who actually told us about MSA after hearing of dad’s symptoms for two years.
Initial symptoms stumped neurologists dating back to mid-2000s. Finally, in June 2012 came a diagnosis of early-onset Parkinson’s. Symptoms rapidly advanced, didn't respond to drugs. In September 2014, same neurologist from 2012 changed diagnosis to MSA following performance of a sweat test, tilt-table test and MRI.
Had my primary doctor work with me and many specialists to remove and get closer to a diagnosis
I diagnosed MSA through research from my symptoms. Confirmed after seeing two other neurologists
a MS specialist at Cleveland clinic
Processive Cerebral ataxia
You first neuropathy and then them MSA
By my Pcp
Neurologist diagnosed me
Initially tentatively diagnosed by cardiologist and referred to neurologist for further evaluation.
MRI Scan. Local GP told her it was thought to be MSA, but he hadn't come across it before. We didn't want to wait for a prolonged length of time on the national health service, so we opted to go private and met with a Neurologist who confirmed the diagnosis.
Testing was also done by a neuro psychologist
we always questioned the PD diagnosis based on symptoms, signs and progression but were always told everyone progresses differently. Not until he was wheel-chair bound and unable to move his arms/hands did we get a diagnosis of MSA
His neurologist thought it had to be MSA as his symptoms were so progressive, so she sent him to see Dr. Wilmot at Emory in Atlanta. He is the Ataxia specialist in this area, he was certain it is MSA. Within a year he was in a w/c with all the other classic symptoms He is entering his 7th year and close to helpless.
My second Endocrinologist reviewed my history and diagnosed Probable MSA. My third Neurologist confirmed her diagnosis and after further testing he placed me in the MSA-C camp.
As he has a pacemaker, he couldn't have an MRI, so just symptoms, eg: high/low bp, gait, balance, Slight resting tremor in right hand, impotent, etc
Initially dx as Parkinson’s, then Parkinsonism, the Parkinson’s plus before MSA dx. Consultant in Elderly Medicine eventually diagnosed after I googled symptoms and asked if it was MSA.
I had done research on REM sleep disorder & found a link to something about MSA. It was a perfect picture of my husband. That was about a year before he was diagnosed.
It was first administered by a neurologist then he individual visited the Mayo Clinic for confirmation
MRI......rapid progression.... symptoms right on target.
Neurology Specialized center
Diagnosis was accomplished by a neurologist.
Neurooncologist Parkinson's movement disorder
ER Doctor....general practitioner.... said the name Shy Dreger
Multiple specialists and PCP
Cerebellar ataxia
Prof. Maek Solms . Head of UCT's neuro department
Internist diagnosed Shy Dragger
A kidney specialist
By a cardiologist that referred my husband to Vanderbilt hospital in Nashville Tennessee
MRI in2013 showed normal pd MRI in2016 showed cerebellum and pond shrunk cause of cell death
By a geriatrics doctor after patient admitted to hospital due to a fall at home. The neurologist had previously diagnosed, stroke, then Parkinson’s and then finally Alzheimer’s, so the geriatric doctor was consulted and believed that something else was going on. He had seen MSA once before so conducted tests and formed the diagnosis.
Neurologist
My son was not diagnosed until after his death when his brain and spinal cord was autopsied.
Final dx determined by an ANS specialist
Self-diagnosis via internet
cardiologist had tests run & sent to neurologist
I self diagnosed the condition initially then was confirmed 6 months later by my PD care specialist who reviewed my symptoms
Seen neurologist, confused about making proper diagnosis. Stuck between Parkinson’s or dementia but missing a few traits of both. Referred to another neurologist who is more specialized in the area. Family doctor believes it is msa. Sending to specific doctor for a formal diagnosis. Seems to meet almost every symptom of msa.
Na
Finally, a PET scan
I spent a month in the hospital in horrible pain the drs couldn’t explain or control. Colon not properly working and found my gall bladder to be functioning at 30%. I failed the tilt table test. I spent days with BP dropping from 60/30 and raising to 200/160. First diagnosed with dysautonomia. Later a neurologist that had at one time been in charge of the MSA study at UAB was brought in for consultation. He ran extra tests and told me I had MSA with ataxia. I refused to go to a nursing home which was highly requested since I live alone and have no support system. I went home but it becomes more difficult for me as time goes by. Moved to Florida because lack of transport and my specialist wasn’t returning to work. Due to fact been diagnosed with several auto immune diseases many years ago I am having hard time with new dr recognizing MSA. His words were “if you had that you would already be in the ground”.
Geneticist was also involved in diagnosis after compiling urology and neurology findings.
The diagnosis was based on a dat scan
Mri
Rheumatologist and cardiologist to begin with
Patient diagnosed self and confirmed but the two neurologists

Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA?

231

28.2%

yes

589

71.8%

If the individual was diagnosed with conditions/illnesses prior to receiving a diagnosis of MSA, please state the condition(s)/illness(es):

Parkinson’s
Parkinson's
Parkinson's
Parkinson’s
Parkinson's Disease
Parkinson
Parkinson's disease
Parkinson's disease
Parkinson’s
Ataxia
Parkinson’s
PD
Cerebellar ataxia
Diabetes
Orthotic Hypotension
Ataxia, pre-Parkinson’s syndrome, slurred speech, vasovagal response, bowel and bladder dysfunction, rem behavioral disorder, dysphagia, tremors, anxiety, hemochromatosis, hypertension, hypotension, low testosterone, falling, impaired motor skills, dystonia,
Heart disease
Early onset Parkinson’s
Autonomic neuropathy
Bi-polar disorder, MS, Parkinson’s, Parkinson’s plus, Spino Cebeullar Degeneration.
Cancer waldenstroms
Parkinsonism
Pernicious anemia
Narrowing of spinal cord
Parkinson s
Depression, High blood pressure
PSP
Parkinson’s disease
He was diagnosed with Parkinson's Disease in 2001. In 2008 after having done Internet research, I questioned the neurologist about the diagnosis. He agreed my husband had MSA and said he thought we had discussed that already.
Morbus Parkinson
Depression, Alzheimer’s and after seeing a psychotherapist he was diagnosed with Frontotemporal Dementia
Gastroparesis
Parkinson disease
Cerebellar Ataxia
Late onset cerebellar ataxia
Parkinson
Parkinson’s Disease
Parkinson’s
Ataxia
Low blood pressure
Rheumatoid Arthritis
Bipolar Poor vision requiring glasses Pulled shoulder muscle Depression Dehydration Lack of water, salt & exercise POTS
Prostate cancer.
Hard to say since he sought help from three neurologists for the tremor in extremities. Parkinson's tremors started at age 46. Within the second year, the low blood pressure and urology problems and difficulty speaking began.
Balance, breathing, swallowing problems
dizziness, lightheadedness. falling down. bladder control, staggered walking
Nesdioblstosis
Syncope, falls. Orthostatic Hypotension
Blood pressure problems Gastrointestinal problems Gait changes
COPD, Emphysema, CAD, S/P MI, CABG, cardiomyopathy, respiratory insufficiency, CHF, Ca of Prostate In remission, recurrent rectal bleeding, post radiation colitis, Obstructive Sleep Apnea, cardiac arrhythmias, permanent pacemaker and defibrillator
Balance & Gait issues Vision issues Tremors
High Blood Pressure ED.
Inner ear balance issue and was told it would go away.
Parkinsonism secondary to cardiovascular disease to the heart and brain and another Parkinsonism plus
REM Sleep Disturbance, Gait Disturbance
Spinal Stenosis
possible stroke
Yes, he was diagnosed with Parkinson's first. He did very well park. Meds. Only later to go a different path and had another MRI to find the MSA present. His Dr. Was Dr. Stewart Factor of Emory in Atlanta. He is the head of neurological, movement disorders., My husband had symptoms on both sides of Parkinson's.
A nerve inflammation, then Parkinson.
Dysautonomia, POTS, IST 2003 via tilt table test and Holter monitors Fibromyalgia 1989 PTSD 1998 Pernicious anemia 2006 Iron deficiency anemia treated by IV iron infusions 2008
Ageing Parkinson’s
High Blood Pressure
overactive bladder retention issues possible ibs (due to constipation)
They told her it was frozen shoulders and bladder prolapse which she had surgery for where they performed a hysterectomy which didn't help, we her family knew there was something more serious going on and insisted her doctor refer her to hospital.
hypothyroidism urinary urgency/ frequency and then retention orthostatic hypotension
"You have either lupus or MS, and we should know once you check 'one more box' that will land you in one or the other." 2. "Parkinsonism"
seizure, essential tremor, cervical dystonia plus had Freidricks Ataxia test
Diabetic for 12 years, but he maintained pretty well almost all the years.
Pacemaker, seizure (uncontrollable), phycological problems
Enlarged prostate Irritable bowel Urinary retention Urinary incontinence
Possible mini-strokes, memory loss, orthostatic hypotension, general anxiety disorder, depression, panic attacks, dizziness, lightheadedness, benign paroxysmal positional vertigo, arthritis, kidney stone, ruptured disk with nerve involvement, enlarged prostate, overactive bladder, chronic anemia, obstructive sleep apnea, REM sleep disorder.
Low heart beat - pacemaker Low blood pressure, dropping when standing Balance & walking issues Hand shaking
Everything I always was told it was either a symptom of having seizures or a side effect of a medication I was taking.
Dysautonomia, Syncope, Pre-Syncope. Also probably unrelated. PTSD, Dissociative Identity Disorder, Hashimotos, Pernicious Anemia, Asthma, SVT, iron deficiency anemia, TMJ
Parkinson’s Disease in 2007, MSA in 2011
Prostate Cancer Postural Hypertension Irritable Bowel Syndrome Charcot-Marie-Tooth disease
Parkinson’s and Parkinson’s Plus
Cerebellar degeneration
Postural hypotension Mental illness Neuropathy Headaches Dry Eye Memory issues Bladder issues Depression Irritable bowel syndrome
Complex regional pain syndrome type 1
Complex regional pain syndrome type 1
dysuria
Parkinson's & Lou Gehrig’s
Early onset Parkinson's with microscopic colitis.
Essential tremor, Parkinson's
Coronary Artery Disease Parkinsonism
No problems/illness could be found after MRI / CT scan / x-ray. For 2 years she was told there was nothing wrong with her other than possible muscular discomfort/arthritis?????? 2. For 2 years she was dx & treated for Parkinson's Disease
Ataxia. Loss of balance, clumsiness, lost fine motor skills.
Diabetic
Sleep apnea, paralyzed vocal chord, dropped bladder
Lyme Disease, Parkinson's Disease
Lyme disease He was tested for MS, Ataxia, ALS Parkinson's Disease
Parkinson's Disease, Familial Tremors
Neurogenic Bladder
Hyperlipidemia, atrial fib
Parkinson’s.
cerebellum atrophy
Orthostatic hypotension, Autonomic System Failure, Mild Dementia, Peripheral Neuropathy of the lower extremities. He also saw bright flashes of light for which there seemed to be no diagnosis.
Parkinson’s, Coronary Heart disease. Heart attack 1991, pacemaker, defibrillator implant, diabetes type II, Ongoing neuropathy more serious than diabetic neuropathy should be, PTSD from Vietnam
Sleep Apnea Neck pain Inability to walk with Back pain/surgery Parkinson's Parkinson's plus

Symptoms:

At what age did the individual first notice symptoms, later attributed to MSA?

20-25

0.4%

26-30

0.5%

31-35

1.1%

36-40

41-45

7.5%

46-50

135

16.4%

51-55

174

21.1%

56-60

187

22.7%

61-65

130

15.8%

66-70

7.9%

71-75

2.8%

76-80

0.6%

80 or older

0.2%

Please indicate the first/earliest symptom(s), which caused the individual to seek diagnosis:

Neuropathy (numbness, tingling in extremities)

134

16.2%

Excessive Neuro-Response (jumpy reflexes)

6.4%

Difficulty Walking

330

39.9%

Impaired Balance

451

54.5%

Fainting

125

15.1%

Falling

270

32.6%

Unstable Blood Pressure

222

26.8%

Dystonia (muscle spasms/ rigidity)

118

14.3%

Neuro-Motor Freeze (temporarily unable to move at all)

6.2%

Myalgia (muscle pain)

11.1%

Tremors in Extremities

149

18%

Impaired Fine Motor Skills

214

25.9%

Head Droops Down or To One Side

4.6%

Dry Eyes

Teary Eyes

3.1%

Impaired Vision

8.9%

Eye Fatigue

4.2%

Optic Nerve Damage

0.4%

Difficulty Swallowing/Choking

4.1%

Excessive Coughing

4.1%

Dry Mouth

6.5%

Overly Moist Mouth

2.1%

Difficulty Breathing

5.2%

Impaired Speech

169

20.4%

Digestive Disorder (diarrhea, constipation)

131

15.8%

Excessive Gas/Bloating

4.7%

Irregularity

6.4%

Impaired Bowel Control

7.4%

Impaired Bladder Control

246

29.7%

Impotence

203

24.5%

Chronic Fatigue

129

15.6%

Insomnia

Impaired REM Sleep Cycle

165

20%

Confused Thought/Cognition

9.3%

Impaired Memory - Short, Intermediate, Long Term

9.3%

Inappropriate Emotions (crying, anger, etc)

9.1%

Excessive Reaction to Minor Stressors

6.9%

Chronic Headaches

7.6%

Depression

110

13.3%

Anxiety

11.6%

Suicidal Ideation/Thoughts

2.9%

Attempt(s) at Suicide

0.7%

Chills/Sweating/Overheating

11.4%

Rashes, Dry Skin, Itchiness

5.1%

Puffiness Under the Skin

1.6%

Other

142

17.2%

Please indicate all symptom(s) which the individual experiences/experienced since receiving a diagnosis of MSA:

Neuropathy (numbness, tingling in extremities)

374

45.7%

Excessive Neuro-Response (jumpy reflexes)

296

36.2%

Difficulty Walking

750

91.7%

Impaired Balance

765

93.5%

Fainting

256

31.3%

Falling

635

77.6%

Unstable Blood Pressure

562

68.7%

Dystonia (muscle spasms/ rigidity)

443

54.2%

Neuro-Motor Freeze (temporarily unable move at all)

350

42.8%

Myalgia (muscle pain)

337

41.2%

Tremors in Extremities

386

47.2%

Impaired Fine Motor Skills

656

80.2%

Head Droops Down or To One Side

328

40.1%

Dry Eyes

250

30.6%

Teary Eyes

179

21.9%

Impaired Vision

368

45%

Eye Fatigue

213

26%

Optic Nerve Damage

4.6%

Difficulty Swallowing/Choking

438

53.5%

Excessive Coughing

198

24.2%

Dry Mouth

249

30.4%

Overly Moist Mouth

184

22.5%

Difficulty Breathing

278

34%

Impaired Speech

632

77.3%

Digestive Disorder (diarrhea, constipation)

532

65%

Excessive Gas/Bloating

162

19.8%

Irregularity

268

32.8%

Impaired Bowel Control

304

37.2%

Impaired Bladder Control

590

72.1%

Impotence

380

46.5%

Chronic Fatigue

397

48.5%

Insomnia

231

28.2%

Impaired REM Sleep Cycle

377

46.1%

Confused Thought/Cognition

310

37.9%

Impaired Memory - Short, Intermediate, Long Term

305

37.3%

Inappropriate Emotions (crying, anger, etc)

313

38.3%

Excessive Reaction to Minor Stressors

231

28.2%

Chronic Headaches

130

15.9%

Depression

379

46.3%

Anxiety

293

35.8%

Suicidal Ideation/Thoughts

Attempt(s) at Suicide

1.1%

Chills/Sweating/Overheating

321

39.2%

Rashes, Dry Skin, Itchiness

260

31.8%

Puffiness Under the Skin

10.9%

Other

183

22.4%

Please indicate events which cause/caused the individual's MSA symptoms to worsen?

None

10.3%

Exposure to heat

299

37.5%

Stress

441

55.3%

Fatigue/exertion

441

55.3%

Lack of sleep

371

46.5%

Diet

111

13.9%

Medication

148

18.5%

Loud noise

139

17.4%

Bright or pulsing/flashing light

113

14.2%

Confusion

119

14.9%

Depression

147

18.4%

Other

171

21.4%

Please list other events which cause/caused the individual's symptoms to worsen:

Infections
After sleeping or sitting for long periods of time I'm barely able to move.
common colds, stomach flus, weather fronts
None. They simply progressed with time.
Not being able to rest often throughout the day or night.
Exercise
Anger House/Yard work Stooping or bending Taking Fludrocortisone
Progression of MSA
medication seems to be managing very well symptoms and minimizing some daily issues
Extreme warm temperatures
Warm or chilly temperatures
It seems strange but every time I've been on holiday, I've gotten worse and ended up in hospital
Meds needed to be regulated all the time., diet depends on his bowel movements. Heat,seemed to make him weak. Depression, and fatigue because he could not do the things he used to do, and his mind said he could, but his body would not respond.
Had an appointment with Neurologist, Dr. Novak of Worcester. He put me on Levodopa and Carbidopa. I had no improvement and stopped taking it, not knowing that I wasn't supposed to stop taking it abruptly. Because of this, I fell, and was hospitalized and was found to have a UTI infection and severely dehydrated. I feel that because of this, I had to rely more on the walker, unable to walk on my own. I also feel that these two drugs had a profound effect on me and caused me to progress in my disease.
She found swallowing very hard, but she had a very strong appetite and was hungry all the time even after eating which wasn't normal for her
Seems that when the diet is high in carbs etc tends to do worse. Sitting for excessive time alcohol
he has worsened since his diagnosed 4years ago
Anticipation of any event outside normal routine, such as doctor's appointment, visit from relatives, trip to the store, etc. Before the event he is weak, his blood pressure is low, and he can't think. While attending such events may be stimulating at the time, he tends to exhibit extreme fatigue afterwards.
medications taken for seizures, seizures menstruation time of month
I would say any shift in temp, routine, sleep, travel, crowds, that will set me back, to Bed and testing only for several days to a week.
death of close. friend. October. 2010 death. of. spouse. June. 2012 death. of father. October. 2013 arguments. with siblings over distribution of dad’s belongings (. I am co-executer)
When in a crowd or public event.
same as above
Unfortunately, both my sister & her husband were in total denial re: this disease & therefore she never accepted physio/occupational/speech, or any other therapy suggested to aid her progression & went downhill very quickly.
N/A
Heat
Emotional upset, eating carbohydrates or drinking alcoholic beverages. He began hitting things with the car and had a moving violation, so the family took his license. He studied the DMV driving manual 8 hours a day for months at a time, then tried to pass the test, failing 9 times. He could not figure out what lane to drive in and confused left and right maneuvers.
gets better as the day goes on, then worse near bedtime.
losing balance, uncoordination, unable to focus leg or feet uncoordinated. unable to change position, nightmares,
His father was murdered in a robbery. My husband had to identify the body at the morgue which was a horrible experience. My husband never got over the death of his father, and although he was not diagnosed at the time, his symptoms got noticeably worse.
excess walk. over heat.
Na
symptom worsen after one last fall
insufficient social activity insufficient planning things to look forward to like trips or events. feeling powerless
Mealtimes worsen OH
General decline over time, wheelchair bound now, poor diet, excessive nausea due to extreme dizziness (like a motion sickness), afraid to eat because of same. Muscle wasting making even standing difficult.
First thing in the morning, I walk (even with a walker) like a drunken sailor, wavy path. It is several hours into the day before I can walk almost normal with the walker. I still periodically trip because I forget to concentrate on picking up my right foot. Right hand spasms and freezes in weird positions if I have a long (multiple course) meal. If I talk too much, my vocal chord tremors get worse and more uncoordinated with the lung spasms.
It was always bad.
when having an infection, usually urinary tract infections, his symptoms would worsen
Being alone, thinking about leaving my loved ones. Thinking about what this damn disease as taken already.
Exercise, missing meals,
alcohol
weather
unfamiliar surroundings make balance issues worse
Anesthesia from surgeries & a bad fall which resulted in a large hematoma along with mom's older brother passing from Alzheimer's worsened symptoms
An antibiotic called iblex. For bladder infection. Caused patient to freeze and not walk..when taking Sinemet. So changed antibiotic.
startle effect. over exertion, unfamiliar situations.
Night time Impatience
Unable to eat until she had the pacemaker was put in, that was just in time! Bladder stopped working to.
Being hurried
Inability to exercise due to shortness of breath, inability to breath. Finally diagnosed with paralysis of vocal chords.
Falling, resulting in fractures. Also, childhood-scoliosis gone haywire.
Stress and excitement seem to make the tremors more pronounced. The medication carbidopa levodopa is of little if any benefit.
He hates to travel in a car. It makes him very sick and nauseated.
Thinking about the things I cannot do any longer and crying a lot. Least little things that Upset me.
Bladder failed Colon failed Inability to speak and chew and swallow food
Medication received after a fall in 2011, during his stay at Ygeia Hospital: Akineton/ Stedon/ Haloperidine. Daily a bottle of each during 6 weeks. Lack of food during that period. He lost his speech and ability to walk by himself after that.
Alcohol, heat, sun, food
Not being able to drive (last three years) has caused stress. I go out twice a month. I get Injection in my eyes (trying to stop bleeding) I didn't raise my hand to volunteer for either disease. We don't have public transportation. I do shake more if I'm around people I don't know. Not knowing what will happen next is hard.
Following stays at the Hospital or times when her routine or surroundings were altered.
People want to visit, and he wants to see family and friends, but he becomes over tired and over whelmed. He also wants to attend mass, has every Sunday for his entire life, but it is becoming too difficult.
Any time he is unable to move for long periods... staying in bed too long, sitting too long. Hospitalization & anesthetics are worst because they do not understand the DX and in most cases will not get him up to sit, stand or go to bathroom... saying he is too weak! Medications that contribute to weakness, i.e., statins, antibiotics, etc. Doctors not paying attention to medications prescribed for other things like cholesterol, that make MSA worse.
Have not noticed
When I'm told to hurry up....I can only move so fast and if I CAN'T MEET YOUR EXPECTATIONS, WELL BASICALLY, THAT'S TO BAD BECAUSE THAT IS NOT THE WAY TO MOTOVATE ME..........
Numerous UTIs always affected him, amplified all other symptoms.
Hospitalization
We've seen that after a point of exercise, symptoms get worse, so we've been trying to find, along with the PT, his neurologist and his pulmonary specialist, when is the right moment to stop doing exercise (walking or playing soccer) because if he exceeds, everything goes crazy. And when I say everything, I really mean it: physically, emotionally and cognitively.
Lightheadedness and exhaustion
I'm not sure of specific events. Since done were trying to relate their msa to a major event.... Diagnosed with TB twice as a child and spent time in TB sanatorium. She thinks it was just allergies. Major wreck in her twenties. Complained of getting out of breath easily and that she might feel better if she had eaten right when she was younger. She still did everything including working outside of the home, taking care of family, teaching Sunday School, gardening, etc. it was just a statement she made. She rarely took any time off for being sick. She felt like her heart would sometimes skip a beat starting in her late forties. She passed out around the age of 65 and again in 70's. Heart hospital didn't find anything. At some point had some A fib. I think the diagnosis finally came after the pneumonia due to blood pressure fluctuations and difficulty breathing. I'm not sure when the dementia regarding short term started, but it may be age related. Dad noticed it. I will guess around 80 years. She is now 86 and some of long term memories are now confused. She also had a couple of falls in her sixties and seventies, but I'm not sure if it was related or if he tripped.
uTI infection, crowds, noise, sunlight, motion
Skipped medications. Stopping after exercising (walking), especially after an incline.
Chemotherapy for bowel cancer
not applicable
Standing too long, especially in one position Sitting too long without being able to shift much (at a talk)
From sitting to standing blood pressure drops, which causes her to feel dizzy/feel faint/sometimes fall over.
fatigue is the main symptom
overexertion - ie - going to a movie, even though in a wheelchair.
Anesthesia Pain meds
Possibly having a feeding tube inserted. He now has to be heavily sedated so that he can sleep. Started having hallucinations and seizure like, restless, confused behavior.
More than 1 person or thing (TV/radio) to be talking. Frustration or irritation. Anger.
Not drinking enough water, excessive caffeine, Dehydration, alcohol intake. lower back pain & hip pain increase loss of balance and falling.
not being able to be verbally understood....
My Dad gets very tired and edgy at big family gatherings
General depression possibly as a result of decreasing ability to look after his 2 cats and later for someone to keep his 2 cats together rather than be separated before he would have to enter a nursing home. Also because of the condition being inevitably fatal and having been a strong, healthy and independent bachelor, he felt helpless and depressed as a result.
Haven't noticed a pattern. It is more like which symptom is going to be a problem today. Is it nausea or the dizziness from the orthopedic hypotension, or pain or?
Long trips to appointments/pleasure trips, extended visits with guests, emotional stress
emotional triggers such as Birth or Death in Family,
Time
Dehydration
N/a
Aspirational pneumonia, multiple falls, multiple bladder infections (possibly due to catheter)
If we have company. Having people over seems to set him off.
Exposure to cold, not eating on schedule
Change of any kind.
pain
Crowds
My mother died in 2014, and over the prior six months I tried to care for her. I carried a great deal of guilt over her death, and I think the stress triggered some MSA symptoms, such as E.D. and urinary retention.
violent drops in BP during or after BM
stress of masking & 'performing' (pretending things are better than they are) in front of strangers or friends. After a visit, he will spend days recovering
Multi-tasking Changes from routine
Other

Are/Were any cycles observed with regard to periods of worsening of the individual's symptoms?

500

64.6%

yes

274

35.4%

If cycles are/were observed with regard to worsening of the individual's symptoms, on average, what was the frequency of the cycles?

approximately twice a week

23.8%

approximately once a week

21%

approximately twice a month

14.7%

approximately once a month

20.7%

less frequently than once a month

19.7%

If cycles are/were observed with regard to worsening of the individual's symptoms, what was the duration on the cycle?

less than 6 hours

14.3%

6-12 hours

12.4%

13-18 hours

2.6%

19-24 hours

4.9%

one to two days

26.4%

more than two full days

121

39.4%

Are/Were there any strategies/interventions that help(ed) reduce the individual's symptoms?

313

44.1%

yes

397

55.9%

If yes, what are/were the strategies/interventions that help(ed) reduce the individual's symptoms?

Diet

144

34.3%

Exercise/Physical Activity

246

58.6%

Physical Therapy/ Movement Therapy

260

61.9%

Acupuncture

6.4%

Light Therapy

3.3%

Speech Therapy

172

41%

Supplements (please describe below)

16.9%

Socialization

129

30.7%

Games, Puzzles, etc.

17.9%

Please list other strategies/interventions that may help/have helped reduce the individual's symptoms:

Rest
Takes Northera, and carbidopa/Levodopa
Occupying my mind with another activity while watching tv. The more I keep my mind busy the less I focus on the pain.
None
Music, getting out of the house, meeting other people
Sleep
Meditation
CBD oil
Drinking 16oz bottle of water quickly while elevating legs. Taking salt supplements. Turning down air conditioner making home especially cold. Sitting or laying down. Bending over until dizziness subsided. Taking lots of various vitamin supplements. Cool rag on back of neck. Crying it out.
Liquid vitamins, bee pollen, green’s, protein powder, chlorophyll.
Water therapy in pool. Symptoms were reduced to a degree, but short-term help.
Reduce family drama....
medication/walking
Cannabis stopped the tremors
Warm therapy. Blankets and warm electric blankets. Sleeping a lot.
Resting
Avoid hot weather or cold weather.
COQ10 - Levodopa
Sleep
My father had a procedure where they drained fluid from his spinal cord which made his balance slightly better, for a while
Pool exercises
For a while fish oil helped ease the neuropathic pain in the soles of my feet. Since my last decline it does not. Compression stockings for pooling in feet and legs Compression belt for pooling in abdomen
Removal of causes of stress
Speech therapy Exercise therapy Socialization Rest
I am utilizing various integrative therapies. Biophoton therapy, Qigong, prayer, supplements, nutrition. Try to exercise as I can. Sleep helps if I am overtired. Also working with LDN (low dose naltrexone)
Massage sodium bicarbonate tablets stretching
LSVT "Big" (for movement and LSVT "Loud" (for speech a AND swallowing) 2. Yoga, and, yoga-styled breathing in all I do. 3. I think my daily core strength exercises have been invaluable...noticing now as movement in decline but my core strength helps me do lots on my own still. 4. Things I do which I "think" help but hard to know for certain since I do so many different things: A. Gluten-free diet (following Dr. Perlmutter's "Grain Brain" book's guidance) B. Hyperbaric oxygen therapy (HBOT).... every six months, I do two weeks of 2X daily HBOT. C. Glutathione IV injection, and a B-12 shot...twice per week.
sleep and the symptoms really worsen after a 2-day dart tournament due to pain and fatigue
Reiki messages helped
Maintaining normalcy. There is usually a lot of laughter in this household, lots of family jokes and "messing" with each other. We joke about his symptoms and make him laugh. For instance, when his walk is slow and unsteady my daughter calls him Speedy.
tried to keep watch on b/p control seizures with changing dosages of meds to changing meds totally, watched if there was any type of paiiern to symptoms
Biotronik Evia Pacemaker resolved syncope, IV fluids resolve per syncope and dysautonomia for a few days
Keeping active, e.g. getting out of the house, interacting with outside world and interacting with other people. Laughing and being 'silly' Deep Brain Stimulation (DBS) has made a big difference with his movement. when we turn it off occasionally to 'reboot' his movement is far more limited.
Bedrest
Earlier, he was helped by Lee Silverman speech therapy and always by OT and PT.
Planning! Travel time, meals on time, meds on time, increased fluids, taking lots time to get ready for any event. No movies theaters.
relaxation reiki
Not waiting too long to start on puréed foods. Starting with milkshakes and smoothies as snacks to keep his strength up. Feeding with a straw and getting plenty of fluids.
Besides PT/MT pool exercises seem to help
After 2 hospitalizations for UTI's because the catheter wasn't cleaned properly a Supra Pubic Catheter was inserted which helped immensely.
N/A
Stay cool in summer
Uses iPod with music constantly
Taking less meds. Lots of exercise.
Ingested 1/8 tsp salt 4-5 times a day to raise blood pressure. Smoking marijuana improved balance and alleviated dizziness.
Ultrasound
Meditation living mindful exercises
Quiet room with no noise except classical music to help muscles relax during periods of dystonia.
Sorry, I wish I could think of something that helped. Other than laughter, which probably helped his loved ones more than him, I cannot think of anything that helped relieve his suffering.
1.Acupressure 2. Pranayam 3. Marm Treatment.
Helping others. Creating awareness.
coconut oil Exercise Physiology
more veggies, green shakes, aqua hydration formula, herbal supplements, B-12
using CPAP (breathing help) lactulose syrup for the bowels yoga
Art, painting etc.
planning recovery time after an arduous day ketonic diet planning something to look forward to
Trialing Zofran 8mgs for nausea at the moment, but increased constipation because of it. Have trailed various other antiemetics to no avail.
Shorter meals more frequently during the day. Timer for talking on the phone (try to do this less than 15 mins at a time). Pacing myself when walking. Stopping to take very short (1-5 min) breaks and then resume.
I'm not sure how to answer that. It was just to suffer through the whole disease. Nothing but Faith in the Lord is all you can say.
the above are very good, but I haven't found anything that appears to slow progression
Massage, eating food high in sodium
Sleep Speaking with adult daughter's assisted with worry, anxiety & confusion.
vitamins a b c d e & Aqua drops
mobilising,socialising,
high doses Mg, St John's wort, Chinese herbal medicine
drinking plain water before rising
Mom didn't have much pain until the latter stages of the disease.... stretches, massage, & oral motor exercises helped to keep her moving & speaking longer...
Staying constant with activity. Extra activity causes problems for the next couple of days. Also increased symptoms before menses, ugh.
Having exercises in a hospital heated pool seems to help with keeping him moving...but is declining faster now and speech is getting worse even with speech therapy. Going into rehab private hospital for a couple of weeks helps check him out and gives us new ideas to keep him mobile and weld. Also good for respite for the carer.
none. Individual has one track mind.
Having a dog.
Catheters Pacemaker
Carers taking more time so he isn't rushed. Listening to him so that his day can be structured around his meals and toilet needs, as they exhaust him.
Computer/Internet
Sleep.
Help with relieving stress quickly
treat the symptoms with medications
Taking Valium helped me and increasing the amount of exercising I do.
Doctor's care
IVIG
Q10, Ashwagandha, Vitamins C,D,E, Cranberry, Turmeric
Chest massage improved the movement of phlegm.
Physical Therapy, Speech Therapy, exercise, equipment that help him move... getting up and getting in and out of car daily. The more he went out and got up and down and in and out of car, the better he was able to move
Scriph
ozone therapy.
Heat blanket
Pramirol helps my tremor and RLS
Vit E; Vit D; Multivitamin (Berocca). Analgesics -Antidepressants-osteo arthritis supplement; arm patches for incontinence; iron supplement for anemia and Vit. B12 injections from General Practitioner.
Keeping very well hydrated and don't skip meals
Glyconutrient supplement Oregano oil for UTI prevention Chiropractor
The main thing that we've used as a strategy is reducing time of playing soccer, maybe in 3 months he has gone only into 1/5 of the time he used to play. He used to walk everyday for 30 min and now he only does it maybe twice a week, of course accompanied and with his cane due to balance issues.
Medication.
Origin Point Method (similar to pressure point massage but different philosophy)
physical therapy
Pool therapy, music therapy Diazepam Mestinon
Massage, but only lasts a few hours
Coq10
I take all supplements recommended in Grain Brain by Dr. Perlmutter.
Relaxation and coenzyme Q10
Panadol (Panamax)
Other

Medications:

Has/Had the individual regularly taken any prescription medication prior to or after diagnosis of MSA?

129

15.9%

yes

682

84.1%

If yes, please list the prescription medication(s) taken regularly by the individual:

Antidepressants, sodium
Sinemet
Statins
Levodopa
First Midodrine, now takes Northera and Carbidopa/Levodopa
Exforge, clonapin, Wellbutrin, Seroquel
Sinemet lodosyn Neupro Labetalol Synthroid prevacid Bentyl Flonase
baclofen pump clonazepam, tizanidine, amantadine, tamsulosin, fluoxetine, Cialis daily
Midol drink Flonef Salt tablets
Insulin
B12injections Statins Omeprazole Vitamin b supplement Frolic acid
Midodrine Carbidopa/Levo Tabs Baclofen
Baclofen Sinemet Thicken up clear Mirtazapine Carbocisteine
Blood pressure, Paxil for depression
I no longer remember those medications. They were all ineffective.
Vitamins & non-antibacterial meds
Madopar LT 250 mg 5 times/ daily madopar retard 250 mg/ night Cymbalta 90 mg as pain reduced Nitro-furantoin 50 mg
Botox for the dystonia None of the gastroparesis medications worked so stopped early on
Midodrine Florineff Velez's
Cilift - depression Rivotril - Parkinsonism Lyrica - Dystonia Doing self catheter
Too many
Modafinil Q10 ubidecarenone Tegretol Aminopyridine rasagaline Venlafaxine Cialis Viagra Vitaros
Gabapentin, Lisinopril, metoprolol
Levodopa/carbidopa Amandine was Requip
Midodrine 10mg 2x/day (stops working after 2wks) Fludrocortisone 1mg (never worked for me) Droxidopa aka Northera - 100mg really helps me
Sintmet
hrt patches, movicol, macrodantin
Carbidopa -levodopa Clonazepam .5 mg Florinef Quetiapine 25 mg Senna-plus tablet
Seniment
Madapor Domperidone Clonazepam
Sinemet for Parkinson's, meds for bladder.
Artane Cymbalta Valium
not here. Personal request will send script info
florineff midodrine
Digoxin, albuterol, Pulmicort, Tenormin, Prednisone, Lopressor, Imodium, Flomax, Singulair
Atacand Somac Cipramil Baclofen Madopar Clonazepam Motilium Ditropan Dulcolax drops Movicol Coloxyl Oroxine Vitamin D
Digoxin Albuterol Pulmicort Prednisone Singular Tenormin Imodium Lomotil Guaifenesin Zomax Lipitor
Lunesta 3mg po od
Sinemet Veneflaxion Omeprazole Neupro patch Clonazepam Simvastatin
Various medication for high blood pressure since approx. mid-20's, various bouts with depression also various meds taken from 2001-2007.Medications after diagnosis of MSA include: midodrine, captopril,
Levodopa
Blood pressure meds Cholesterol meds
Imdur, minnax, somac, Sinemet, Lipitor, Frisid, Panadol osteo, sifrol, spriva, poly tears, Nasonex, asasantin, endone., mirtazapine, baclafin, Lyrica, Florinef, Ventolin, fentanyl patches
Carbidopa/Levodopa
Coreg, Lasix, Plavix, anti-depressants, cholesterol med, levothyroxine, estrogen,
syntroid
citalopram
Sinemet, midodrine, fludrocortisone
Carbidopa/Levodopa, Cymbalta, blood pressure meds., a sleeping pill that worked for sleep and restless leg., forgot, the names of the last two., they worked very well., I, would have to, look them up.,
Sinemet, Mirapex, proamatine
Dexilant for GERD Ambien for REM sleep disorder Clonazepam for startle response, RBD sleep disorder Gabapentin for neuropathy Vyvanse to increase blood pressure
Fludrocortisone Betmiga
Topzole for gastric reflux
Various medications for high blood pressure since the mid-eighties and medication for depression at different times.
The only med I was on was Sinemet. I am slowly going off that and trying LD. There has been a lot of success with this reducing Parkinson symptoms. Something to look into...
Prolopa, Cialis, Nexam, Diclofenac, antidepressant
Synthroid Lipitor (now stopped) Nexium
Fludrocortisones Pramipexole Sertraline Diazepam Amitriptyline Fiorinal
Metoprolol Fludro cortisone AlfuzosinHCC ER Sinemet Trazadone
clonazepam, baclofen, omeprazole, diclofenac, Spiriva, Symbicort, Ventolin, Tylenol 3
syndopa 125, urimax d, gemer ds 2, zevert md 24mg, rozaval 5, Nuala e, delok 30, Zintec 150
Keppra - for seizures
Effexor Sinemet (started taking 2/21/14) Have tried many different meds
fludrocortisone acetate, 1mg., nortriptyline hcl 10mgs., mestinon timespan 180 mgs.
All the Parkinson's meds and thyroid medication Synthroid for graves disease
Alfuzosin (Uroxatral) 10. Mg qd Azilect .5 Mg qd Clonazepam (Klonopin) .25 Mg qd Clopidogrel (Plavix) Finasteride (Proscar) Fludrocortisone (Florinef) Levothyroxine (Synthroid) Namenda Myrbetriq Paxil Pyridostigmine (Mestinon) Sertraline (Zoloft)
Zoloft Pristine Trazodone Flexeril Midodrine Lorazepam Fludrocortisone toviaz
felbatol-600mg tid lamotrigine100mg bid clonazepam0.5mg ai bedtime
Lexapro, levothyroid, B12 injections, IV Iron Fereheme, IV Fluids, klonopin, trazodone, skelaxin, max all, Xopenex
Stalevo Sinemet Florinef Thyroxine Effexor
Lovastatin
morphine sulfate; Lyrica; levothyroxine; zolpidem; amitriptyline; Flomax; carbidopa/levodopa;
Sinemet, amantadine, Nexium, clonazepam, midodrine, baclofen, zoloft, B-12 injections
Mestinion Lyrica Requip Pinpoint Vicodin
Baclofen, Cymbalta, Neurontin, clozapine, Namenda, trazadone
2.5 mg midodrine 4 times daily
Eldopa
Sinemet azilect
Metformin, carbo levodopa, and a blood pressure med I can't recall.
Arimidex, levodopa, domperidone
Sinemet, Midodrine, Pyridostigmine, Lipitor, Bactrim, aspirin
Remeron, Lexapro, antibiotics,
Endep Sinemet Sifrol Duragesic patch (Morphine)
Flomax, antidepressant, ledopea, and a drug to raise blood pressure
Maintenance Pills: Pravastatin Sod. 80mg Hydrochlorothiazide 50mg Omeprazole 20mg Diovan 160mg Amlodipine Besylate 10mg
Diabetic meds including insulin, metformin
Ativan
Too many to list. Individual is totally dependent and resides in a subacute care facility having had a colostomy and Foley catheter in June 2011 and a tracheostomy in December 2013.
Sinemet, dopamine
Antibiotics for Lyme Disease
Carbidopa Levodopa
Atenolol, simvastatin, Flomax
carbidopa levodopa
Midodrine
Metformin, Docusate sodium, Tylenol, carvedilol, gabapentin, flimiprimide, sennosides, baclofen, Pradaxa, sertraline, furosemide, spironolactone, Lantus, finasteride, Vicodin, MiraLAX, metolazone, lactulose This is all his meds which include coverage for heart issues and diabetes.
Metformin, atorvastatin.
depression meds do not know names of others
Clonazepam
none cabdopa-levodopa - no help
Celexia which he stopped taking all at once rather than a step down on his gp's advice cholesterol and high blood pressure drugs for 20 plus years

Has/Had the individual regularly taken any over-the-counter medication(s) prior to or after diagnosis of MSA?

405

51.3%

Yes

384

48.7%

If yes, please list the over-the-counter medication(s) taken regularly by the individual:

Ibuprofen
Advil
Pain medication
Tylenol
Ibuprofen
Omeprazole 20mg 1 per day (aspirin 81 mg 1 per day (Calcium/with vitamin D, 600 mg 1 per day (Milk of Magnesia 500 mg 3 per day
Aspirin
by doctor suggestion folic acid vitamin B-12, D, E, Flaxseed oil, Aspirin
Vitamins
Aspirin
Zyrtec allergy pills Melatonin
Aspirin
See above
Parkovit, Vitamin Mix content --b12, folat, d3
Multi Vitamins
Mucinex
As above except rasagiinr
Fish oil, Vit D, CQ10, Vit B12, Vit B complex, Panadol osteo, occasional Panadeine (10mg.) lutein,
Excedrin
Melatonin
Low dose aspirin, Senna
Aspirin Various diet pills for energy 5-hour energy shots Many various vitamins/supplements
Vitamin C Vitamin D Ibuprofen q Q10
Guaifenesin, Sudafed,
Guaifenesin Sudafed Aleve
stool softener MiraLAX
Stool softeners Psycillium Husk Fiber Men's multiple-vitamin Vitamin D3 1000 IU Aspirin 325mg Melatonin 5mg
aspirin, ibuprofen I'm sure there others I just can’t think of them presently.
COQ10
Aleve Motrin Aspirin
Multi-vitamin fish oil
Echinacea, Excedrin, vitamins,
Benadryl Sudafed
Aspirin Senna Papaya enzyme tablets
She suffered bad hay fever and sinus problems all her life and was always buying nasal inhalers like Sudafed to try and breath better
vitamins coconut oil vitamin d/ca++
Advil Aspirin
COQ10 B12 and B6; D3; vitamin C; zinc; multi-vitamin; magnesium complex Niacinamide; acetyl carnitine; probiotic
syndopa 125, urimax d, gemer ds 2, zevert md 24mg, rozaval 5, Nuala e, delok 30, Zintec 150
Prilosec
multi vitamin
Aleve (Naproxen) Ferrous sulfate (Iron) Imodium Florastore Multivitamin w/o Vitamins A&E Phazyme Vitamine B-12 Oral Vitamin D-3
Bayer children aspirin, stool softeners, different laxatives, eye drops, nasal sprays different pain meds
Advil, Aleve, tums, Pepto, Excedrin
Rifampicin, ragaziline, citalopram
81 mg aspirin daily;
MiraLAX
Anti diarrhea med Pain reliever Pain patch Multi vit Eye drops
Motrin, omeprazole
Tylenol arthritis, Advil
Coloxyl
Centrum Glucosamine/Chondroitin
CoQ10, Vitamin B Complex, Fish Oil, Vitamin E, Vitamin C, Vitamin D, Asprin 81 mg,
Prior to diagnosis Vitamins & Supplements, laxatives, stool softeners
Vitamins, Ibuprophen
Tylenol, Ibuprofen
Claritin
Stool softener.
Vitamin D Omeprazole Zyrtec
multivitamins, calcium, vitD & 12, coq10
Vitamins, Tylenol
Viagra Dilantin
Ferricure
Krill oil: multivitamins: cranberry tablets:
licorice (candy that keeps the blood pressure under control) Fibers (to keep the bowels going)
Paracetamol, ibuprofen
CoQ10 - 800mg daily from 2006 -2013
MiraLAX and Senokot to prevent bowel impactions AZO Standard when I get UTIs due to bladder retention.
ASA, Vit D
ibuprophen PM Omeg 3 Glutathione 4x per day
Vit E and D Magnesium
vitamins-vitamin C, multi vitamin, vitamin E
vitamin D, and C, Krill, and fortify
sleep aid, laxative
glucosamine chondroitin lipoflavinoid vitamin D3 baby aspirin CoQ10
laxatives
Omeprazole 20 mg Ibuprofen 200 mg Melatonin 5 mg
insulin for type 1 diabetes
vitamin d. multivitamin
Dulcolax
paracetamol as needed
Mom stayed on metanx which is a strong bcomplex vitamin along with the largest calcium vitamin you can buy due to pernicious anemia...I believe these helped keep her from getting common illnesses like colds or flu during her decline when I was ill & taking care of her.
Ibuprofen for pain, discontinued when started warfarin
Now on aspirin to keep blood thin and now takes vitamin d once a month as has osteoporosis.
variety of vitamins. since the 70s.
Culturelle Vitamins
Something for heartburn Something for his sleep to stop night terrors. Something for his blood pressure
Pain killers for headaches, muscle aches and pains. Vitamins and mineral supplements. Melatonin to help sleep issues.
cranberry flax seed oil fiber
Baby aspirin.
Vit C Miro-lax Ducalox Stool softener
Vitamin B12
B Complex, Grill oil, ubiquidol, manganese peroxide,
Coliria, Losec for his stomach, painkillers for lumbago e.g Mesulid.
Tylenol Advil Aspirin
vitamins, cherry extract for gout
Motrin, Tylenol.
Diabetes Medicine including Diabex and insulin
Glucosamine.

Neurological Care:

On average, what is/was the frequency of the individual's neurological care?

less than once a year

7.5%

once a year

8.5%

twice a year

236

29%

three or more times a year

391

48%

no neurological care since diagnosis

What is/was the nature of the neurological care the individual receives/received during these visits?

neurological consultation

555

71.4%

neurological assessment

578

74.4%

MRI

310

39.9%

CAT scan

155

19.9%

Other

12.7%

If 'Other" - please describe:

see above
Nerve conductivity test, spinal tap, 8 MRI, EEG, EMG
NCS test for testing numbness of hand and foot nerves
2-hour psycho-neuro exam, nerve conduction study
had uncontrolled seizures since age of 5. cannot find any causes. found out that epilepsy runs on fathers’ side of family. seizures were always worsened just before and during menstruation
He had deep brain stimulation (DBS) in 2010 when about 3 years after he was diagnosed with Parkinson’s Disease. We see a psychiatrist together 1-2 a year to talk through issues. this was particularly useful when he was able to discuss that he had hypersexuality issues and was finding that he had been attracted to men. This had been quite distressing and combined with impulse control issues caused by both disease and medication meant that he had acted on these impulses. This was resolved when the medications where lowered but caused much distress to the family. He has Botox quarterly to keep his eyes open
Neurologist always makes sure spouse sees her compassion and care - and gives hugs and comfort prior to leaving.
Botox shots to help with excessive saliva
Sleep study Saw a cardiologist bec of chest pain. Placed a stent in heart artery.
He was told to drink more water, and add salty foods to his diet
I am now on hospice so going to the Dr. less now.
Review of medication effectiveness Recording and assessing new symptoms Referrals for bloodwork and other tests twice a year Neuropysch testing every year for last 3 years
migraine headaches
DaTScan
Mom's 1st diagnosis was a benign tremor in 2007...she neurologist hopped for other opinions & ended up with a movement disorder specialist that diagnosed Parkinson's...meds weren't working but mom pursued options to fix her bladder issues & received a stimulator upon retirement in September of 2012..as we fought to bring her back from 2 surgeries in 2 weeks she wasn't getting stronger with rigorous therapy...a few months after surgery she had a bad fall that resulted in a fist sized hematoma...as she continued to decline we asked numerous questions with the PAs in her neurologist practice to which was answered you have Parkinson's....you're only guaranteed a visit with your specialist every 3 appointments...as soon as mom spoke Karen (Dr Karen Thomas)turned her chair around & for the 1st time didn't suggest therapy...she put her hands on our knees & said Ladies we're dealing with a whole other beast, this is MSA Type P not Parkinson's...we followed up with an MRI which showed beginning of hot cross buns common in MSA...she asked to bring in some interns so they could learn to spot the difference in their future patients....we never went back & mom was gone in about 6 months
extreme pain in wrist.... upper left arm.... legs
variety of medicines to treat symptoms such as bladder issues, REM disorder, depression, bowel difficulties.
Regular exams by general practice doctors
Admitted in hospital for observe
I get Botox for the tremors and to relieve the pulling of my head to the left
Adjust meds
EMG, Tilt Table Test
Immunoglobulin & Plasmapheresis for AAG
Lung
Our neurologist is the best thing we've had. He is excellent prepared, always making/working or research and besides he is a great human being: caring and asking about how we are coping with it. He is also the neurologist of my 2 only kids (one with TBI due to a ski accident and the other with epilepsy + sport concussion + TBI due to a physical assault at school). So, he is helping me coping and preparing them for every next step. This was, we take care of the 3 of them, the best we can!
She hasn't been to a Neuton in several years. It is difficult to get her up to go to a Dr, and they really haven't helped.
Complete study, with electrodes, overnight in controlled environment, and report with explanation, examples, and findings.
adjustment/changes of medications
My brother, Tony also gets BOTOX injections for his ankle from a neurologist; every four months. It seems to help him with rigidity and spasms that kept him up at night.
Also tried Azilect no noticeable improvement so discontinued
Upon initial MSA diagnosis, neurologist visits were monthly for 6-12 months, then quarterly, followed by semiannual and recently annual or semiannual depending on issues needing to be addressed.
The scans were done initially for diagnosis.
The Doctor plays checkers with my meds.
After Diagnosis the Neurologist met with my three children. Age 22 to 28. To discuss the seriousness of my disease.
a multitude of tests, assessments, and evaluations at Mayo Clinic
DATscan, EMG, Spinal Tap
Nuclear test where they inject nuclear dye in to the system and you wait three hours for the scan
Review of the Apomorphine pump
Sees a neurological psychiatrist every 3 months
Electromyogram test
Ongoing care hasn't started yet
Pulmonologist consultation GI consultation
comparison MRI and a testing center for the dementia where he had several hrs. of testing that diagnosed frontal temporal dementia and not Alzheimer’s
Every three months I receive Botox shots in both legs and back from my neurologist.
swallowing issues, had 2-swallow studies performed and sleep study.
New symptoms review Tests or referrals as necessary
muscle biopsy, EMG
Neurological/chiropractic care
medication management
Swallow study, tilt table test
Sweat test at Mayo in Rochester, Minnesota
Spinal tap, EEG, PetScan, Neuropsychological testing
OH tilt table test
He had had one MRI in the last 5 years
Dr has moved away, so need a new one
Blood tests
DAT scan
Dat scan
Literally became a check in where the neurologist said “yes, your symptoms are worsening”. No advice - but it helped the patient feel like he had an audience at least. The visit itself helped combat some depression.
currently trialing Parkinson drug but no benefits yet.
Skype consultations as neurologist is in Melbourne (we’re on other side of the country)
Had some physical therapy for walking and learning how to walk with my balance problem and exercises for stiffness.
We've found these visits pretty useless as there's really nothing to be done. (This has been intimated as much by the neurologist herself/himself)
Video interview to document progression
Nerve conduction tests, rehabilitation hospital, Physio therapy, eye tracking exercises
Nerve conduction tests, rehabilitation hospital, Physio therapy, eye tracking exercises. Sleep specialist alarmed at my gait & symptoms months after discharge from hospital and rehab. He referred me on to another neurologist who was “interested in genetics”.
DAT scan, spinal fluid exams, hot box exam,
permanent Bladder catheter surgery
injections to help relieve dystonia in toe and foot
palliative care counseling
has been given MRI once (for diagnostic purposes)
Neck strain and pain just before syncope and stuff man syndrome seizure.
Evokes potential and others I don’t know about
neuropsychological assessment; neuroopthalmologist exam
Just had a "Memory Study" done in February. Dr. stated my evaluation was very good. Dr. Manik had ordered it to use as a base line.
He has difficulty at times swallowing and once a year they have done a swallow test. So far, he is ok
Referral to more specialized neuro, referral to OT, PT, SLP, tried different meds, told me when to use mobility adaptive devices. Cheerleader.
tilt table test
Blood work
Botox injections in legs & thighs
Lots of blood tests, which ruled out other diseases, this the MSA final diagnoses
Periodic blood tests
engaging neuroplasticity to slow down progression of symptoms.
Tilt table test
Tilt Test, Blood Work, Urinalysis
Neuro ophthalmologist assessment
I was in hospital so not sure what other tests he ran than tilt table test.
Had Dat scan following initial diagnosis.
Autonomic test Thermoregulatory sweat test MRA Speech consultation Physical Therapy consultation Urology consultation Nephrology consultation 24-hour blood pressure monitor
spinal fluid test
Dr threw his hands up and said he couldn't help, he had no idea on how to help.
Botox

Has/Had the individual participated in clinical research regarding MSA?

717

88.5%

yes

11.5%

If the individual participated in clinical research, which agency/group oversaw the study?

NIH
Mayo Clinic
University of Michigan
University of Florida
Hershey Medical
Mayo Rochester
U of Michigan
Vanderbilt University
Astra-Zeneca study
Alfred Hospital Melbourne
Vanderbilt
Mayo Clinic Jacksonville
neurologist, respiratory professor, virtually all scans tests and examinations covered over the last twelve months
No
No
Beth Israel Deaconess Hospital
Emory university of medicine. Atlanta, GA
Beth Israel of Boston
Michael got part in a few trials at the Royal Hospital Belfast with Dr Gibson unfortunately Dr Gibson passed away during trials
mayo Clinic trial of Rifampicin
Stanford clinical study.
NYU
United Buofeed???? in King of Prussia, PA
Mayo
Univ of Florida
University of Sydney, Brain and Mind Research Institute
By the time we received mom's change in diagnosis, we were already on borrowed time & she was in a wheelchair with very limited mobility...even getting to the doctor was taxing & required help from my husband or son
Cleveland Clinic Foundation
Rush Chicago
Johns Hopkins believed I had CA-14.
Greenslopes Hospital
university of Michigan
Hospital in Ann arbor
pist mitten autopsy by Mayo
UBC did an informal research with my Dad and brother; as my father was diagnosed with Parkinson’s a few years ago.
University of Saskatchewan neurology dept. clinical trial of Neupro patch
Public health records
University of Colorado
UCLA Dr. Brent Fogel 2014 do not know. Left Blood sample
Mayo Clinic Stem Cells
Astra Zeneca Clinical Trial
NYU Langone Medical Center in New York, NY New York-Presbyterian University Hospital of Columbia and Cornell Michael J Fox ASTRA ZENECA
Beth Israel hospital in Boston
Pet Scan Biomarker Medical Research Study Done at U of MI
None, he was far too progressed and did not qualify. His symptoms were just so fast
UMD Eutaw St MD
NYU Langone Medical Center, Dysautonomia Center
Autonomic Dysfunction Center at Vanderbilt
Mayo clinic Rochester MN
Future study: NY Langone dysautonomia clinic
University of Rochester
Betyiti
Mayo Clinic Rochester MN
Vanderbilt Autonomic Dysfunction Center...Dr. David Robertson (Oct..2003) and Mayor Clinic...Dr Low (2014)
Columbia university physical, history, bloodwork
NHI
University of Colorado, Colorado Neurological Institute
He tried to get into a study at Mayo but was too progressed to participate.
University of Colorado Neurology Department
Astrozeneca-AZD3241-Stanford
Beth Israel Deaconess Hospital, Boston
Mayo Clinic
mayo clinic brain bank
AstraZeneca Blind Study
UBC Movement Clinic
Vanderbilt University
University of Rochester, I believe
We did attend the MSA Coalition's conference in Nashville in October of 2017
Mayo Clinic, MN
Dysautonomia clinic NYU Langone
Vanderbilt
Dr. Jancovic MD in Houston Texas Movement Disorder Center.
Ponies study for Parkinson’s Disease notnMSA
Mayo Clinic, Minn.
movement disorders clinic at the Ottawa civic hospital.
NYU Langone dysautonomia center
UTSW, Dallas
UT Southwestern NIH
Hospital Clinic de Barcelona
Mayo Rochester MN
UT Southwestern
Mayo Clinic, Rochester

If the individual participated in clinical research, what was the purpose of the study?

Diagnosis
Study of brain
Slow or cease symptoms
Using magnetic tools to assist with diagnosis
don't remember
Rifampicin Trial
Rifampin
compare to Parkinson’s
How if at all what effect Rifampicin has on MSA... They stopped the trial early due to actually make some patients worse. I was on a placebo.
It was for Parkinson's. Symptoms, everyday, gave blood also.
The effects of rifampin an
earlier detection of MSA
Epilepsy
Dr. Gilman was researching for MSA, my husband donated his brain upon death
Efficacy of Rifampicin, results negative, study stopped, still taking because of no ill effects. no changes. also taking ragaziline and citalopram.
MSA study
Rimafrin
To teach physicians howt o diagnose
don't know- possibly what medication or treatment may help
family MSA genetic study
Effect of terazosin on motor skills in patients with MSA. Double blind study
blood study
genes?
To find out what she had.
data gathering
diagnosis
Study of the brain and function with msa
early detection
Spent 6 months in hospital before they found it was shy Dräger
Medical research
Research for diagnostics
To determine if mesenchymal stem cells were safe to use in humans.
administering med through patch system
To determine if the condition appeared to be inherited
Drug Therapy 2. Long Term Study - Alzheimer’s Study expanded to include other neurological diseases.
Study on neuropathic orthostatic hypotension
To take a research drug
Stem cell research
AZD3241 myeloperoxidase inhibitor to reduce inflammation and slow progression of MSA
ASTRA ZENECA was for an MSA medication
Follow patients, offer support
To Detect Biomarkers and be able to stage MSA-p
MSA cohort study
Following people with movement disorders.
Retina studies for early detection of MSA
Effect of Drinking Water on the Pressor Response to Pseudoephedrine in Patients with Autonomic Failure
General research to find out why this is happening
unknown, guess for his patients?
OH study
Beth Israel deaconess
Own Stem Cell placement therapy
Vanderbilt Orth static Hypotension. Mayo how vessels control BP and attempt to identify possible environmental and genetic causes (Dr. Cliff Shults San Diego Study)
background info
Fact gathering
To determine if the condition was hereditary, to determine the effectiveness of medicine
To determine if MSA was inherited
Asyne modification
It was a study to aid in the diagnosis of MSA through skin biopsy.
Observation
dedicated brain for research and disease confirmation
possible treatment medication for MSA
PET scan to look at Tao protein in brain
Blood pressure, sweat test
-Raise no
General DNA sample and two surveys
DNA, search for bio makers, and two longitudinal studies
Find out if Strattera increased low blood pressure.
Regulate BP
The study was done during the years 2003-2007 to research the progress of the MSA and research to find cause of illness.
Collecting bio marker data
Gathering baseline data and adding info to general data base
differentiating between Parkinson's and msa using mri.
The first clinical trial was for low blood pressure medication Strattera or amoxetine 2. I’m now in a clinical trial for the futility of Sirolimus
just surveys for the effects of the disease
MSA assessment
Research
Unknown
Stem cell treatment

If the individual participated in clinical research, what were the outcomes of the study?

Brain autopsy, Florida. Diagnosis MSA C
Confirm diagnosis
unknown
None yet
Don't know he stop as he got worse.
Not done yet
Still underway
don't know
Ongoing
Noneffective
Didn't help
No study
see previous answer
Not sure!
They had to stop the study
ongoing
Above
Fail
still ongoing
I don't believe the study was completed because not enough patients. I did notice an improvement in walking and motor skills and continue taking terazosin to this day.
don’t know
They found in the end that it was Shy Drager now MSA
Didn't complete the study
not completed
Confirmed MSA
Undetermined
Stem cell injections above 50 million were not safe to use in humans.
favorable method of administering meds
His condition did not appear to be inherited
The drug proved not to effective. 2. Either the Long-Term Study was canceled, or I was never asked to return.
They worked with different agents to reduce NOH. I can't remember what the conclusion was, but he was at Vanderbilt around February 2014.
He was too far advanced for the drug
Good at first
Currently still in progress
Didn't get accepted into drug trial
Still ongoing
Ongoing research, we don't know all results
Not positive we
No change what so ever
Nother sure
Not heredity, had reaction to medication
MSA did not appear to be inherited in his case
Posted clinicaltrials.gov AZD3241 MSA
Don't know.
confirmed MSA-C
negative
Have not received results
Don’t know
Still in progress
I am still taking Strattera (atomoxetine). It maintains my blood pressure. It. drops when I stand but not by so much.
Positive—medication worked
We were never given the results. The only thing we learned from the study was that my husband was the last one surviving.
research not concluded yet. Findings not released yet.
I am still using amoxetine for blood pressure
No idea
In progress for 3 yrs
Unknown
Established the safety of spinal injection of patient’s own stem cells

If the individual participated in clinical research, please describe the individual's satisfaction with the study experience:

Sol
None
At first it was interested, to find out what was going on, then he got tire of all the test.
See above
Very good.
Good
excellent
Wished it had helped
satisfied with competency
good
None
I knew i was on placebo so i was glad trial ended early.
Not.
I didn't want to, participate because I knew I had the placebo
very good experience, researchers were amazing people
Overall lacked feedback.
Excellent
OK
ok
Good food.
satisfied. still ongoing
Very satisfied.
just donated blood
It was good to find out what the illness is
Very good
excellent
great
Yes, it felt like I could help others
My experience was unsuccessful.
very satisfying results
It was only a blood test.
Decided I was going to be more selective in research I participated. 1. With the advancement of tools available, I would have been interested in participating in studies that researched the underlying cause. Not as interested in finding bio-markers for a drug manufacturer sponsoring the research. 2. After Dr. Sid Gilman left University of Michigan, leadership (Head of Neurological Department) in my opinion chose to de-emphasize MSA. Top leadership focused on diseases they each had own research labs being funded.
He seemed hopeful that the new medication would reduce NOH. Eventually he was able to get off that medication as well as the nitro paste as he became less active.
They ran different tests to confirm the suspicion of MSA
Wanted to continue. Was denied
To be determined soon. Final PET Scan scheduled 8/23/16 @ Yale New Haven CT
Katie was happy with the trials except for ASTRA ZENACA.
Very thorough, but very LONG tiring sessions. Abundant paperwork, Back to back on all system assessments without breaks.
OK-positive experience
No clinical trial but traveled to Freeport, Bahamas for stem cells.... sadly, no improvement from this!
Will continue to be a research participant
unknown
My husband was satisfied with the experience and glad to add to body of research.
Weak
He was satisfied
She wanted to do anything that might help herself and others.
Happy to participate
fine
Good
Fine.
Satisfied
non-effective and very intense visits for 6 months
Positive
Satisfied
He was pleased to be part of research.
Thrilled to be a participant!
I was very satisfied, I am hoping to do another study.
My husband received free medical care during the study but was not given any results of the study.
Fine
No concerns
overall positive experience. high level of professionalism. utmost care and concern from staff.
I enjoy working with the team at NYU Langone. They ensure my safety and they answer my questions. They have instilled a trust.
of no help to us. surveys provide information to clinic
Pending
Very satisfied
She felt that it slowed the progression of her disease

With regard to possible MSA-contributing factors, which of the following did the individual experience prior to receiving a diagnosis of MSA?

Prior single traumatic brain injury

4.5%

Prior multiple traumatic brain injuries

1.8%

Prior single head trauma resulting in concussion

8.7%

Prior multiple head traumas resulting in concussion

9.2%

Prior history of chronic headaches

109

14%

Prior neck injury

9.9%

Prior multiple neck injuries

4.4%

Prior exposure to chemicals/toxins

215

27.5%

Prior exposure to high levels of stress

133

17%

Prior diagnosis of Post-Traumatic Stress Disorder

5.2%

Prior diagnosis of Seizure Disorder

2.3%

Family history of Alzheimer's Disease

10.2%

Family history of Parkinson's Disease

9.9%

Family history of Multiple Sclerosis

2.4%

None of the above

240

30.7%

Other

237

30.3%

Please tell more about the contributing factors stated above:

Mother and grandmother had dementia
Bad headaches when young
Possible viral meningitis, a few years later a possible mini stroke or seizure.
Former Career US Army Officer given in 1987 a medical retirement for combat related injuries from the Vietnam war. I served as an Airborne ranger in the 82nd Airborne Division with 68 parachute jumps and later was an armored tank company commander twice. All in total I had at least three head injuries in combat and at least 6 to eight concussive injuries. I was also heavily exposed to chemical agents like agent Orangel, red and blue.
Fire fighter smoke
He strips and wax floors as his job without using protection, always complain of headaches, work long hours.
As a young man, he worked with solvents in a textile plant.
Grandmother had Alzheimer's
7
Heavy timber construction worker - a beam knocked him down and fractured his orbital bone, cheek, concussion, broken clavicle. Also exposed to various chemicals during work, above acid baths, corrosive chemicals, etc, carbon paper factories, etc. Gas and diesel fumes.
Multiple car accidents, motorcycle accident, pesticides, asbestos
Car accident resulting in concussion & memory loss. Numerous whip lash (jerking of head) from sudden scare causing severe neck pain. I worked in chemical plant for 9yrs & I use a lot of home cleaning products without gloves or masks. Stress: abusive husband for years, unruly daughters, single mother, traumatic family issues
Worked for 20 years in air conditioning repair using chemicals such as freon, etc Father and grandfather had Parkinson's.
Pt swam in a chlorinated pool 2 hours a day, 7 days a week for 20+ years! Pt had and still has a child who is highly socially dis functional (questionable bi-polar) who created and still does complete havoc 24/7! She is currently 24 years old!
The condition presented in full after MVA with head trauma wi secondary small hemorrhagic subarachnoid hemorrhage in April. By May full blown picture.
Exposed to mercury in early teens. Exposed to DDT, Dieldrin, Sheep and Cattle dip and other toxic chemicals in childhood.
Had MVA April 2012. By the end of May 2012 full blown picture developed. Had a head trauma with a sub arachnoid hemorrhage self es absorbed developed.
hi level leadership accounting role.
Worked for fire department for 13 years. That accounts for high levels of stress and exposure to toxins, mainly smoke.
Never officially diagnosed with a concussion, I never went to hospital the several times i had blown to my head
The neck injury was whiplash motor vehicle accident Chemical exposure was in my job used I the cleaning of machinery for food production
aunt with Parkinson’s
Several falls causing concussions (from horse, gymnastics), rear end car accidents, neck injury with horses,
He was an aircraft mechanic, worked around a lot of fumes., also, when a small boy his mother and him was found unconscious and brought back.
Fell off a school roof at the age of 11 and hit his head, chipping his teeth and had a concussion. The stress level was from the work he did.
No immunizations as a child, had mumps, German measles, scarlet fever, almost constant strep. Victim of childhood neglect until I left home at 16 Married 11 years to an alcoholic, drug addicted bipolar abusive teacher. Had three kids by age 23 Battered women’s shelter with kids, stalked and threatened for years after leaving. One child mentally ill, bipolar and schizophrenic, had to homeschool This child moved in with me pregnant and abused me mentally and physically the year MSA symptoms stared. After raising three girls as a single mom with no support, I am now raising my granddaughter as a single mom with no support, very limited resources and no physical help. She us three and has never had a sitter because I cannot afford one.
Regular exposure to aviation fuels during a 30-year flying career
For 4 yrs he had to do an hour-long flight commute weekly, to work. Early rising, late night return home and extremely stressful job. All this coincided with our daughters' wedding, which added to the stress.
Over the years I had blows to the head. I did not seek medical attention, so I don't know if I had a concussion or not.
My neck has always been a problem for me, and I remember when I was young jumping out of a tree and hurting my neck, but I recovered ok without medical attention. I have spasms off and on and tightness quite a bit. I am a type A personality and have lived with stress most of my adult life. I have often thought that the neck and stress might be contributing factors. Some major stressful events happened about 10-15 yrs. prior to diagnosis. No family history of anything neurological. Eldest sister did have shaky hands and a twitch in her mouth later on in life.
She lived in Belfast Northern Ireland during The "Troubles" and experienced a lot of stress years ago and she was always stressed out about everything her husband died of Motor Neuron Disease at age 45 when they met they worked in a toy factory together, there were solvents used there it was early 1960's always wondered if there could have been something they were both exposed too.
He is a business owner and whenever a stressful situation with partnership etc occurred, symptoms increased. paternal grandfather with Alzheimer’s at 60-70 years of age
As a high school multi-sport athlete, and a scholarship collegiate basketball player, I broke my nose twice; and separately had my front teeth knocked out. I also suffered 2-3 neck injuries that were in the late '70's-early 80's called "whiplash" but led to 4 herniated cervical disks. I also have two herniated disks in lower lumbar. Ironically, since being diagnosed with MSA nearly 6 years ago, and quickly embracing yoga and a focus on proper posture, I have had a much-improved experience with neck/lumbar spine-related pain and stiffness.... the best stretch since my early 20's. My Dad was diagnosed with Parkinson's Disease at age 70 and died at age 82 of PD complications.
I was in 2 car accidents that resulted in whiplash and had a few falls earlier in life that resulted in concussions. My father and his father have/had Alzheimer’s. Maternal grandmother had tardives dyskinesia. Was also in a motorcycle accident 2 months after dx
He had been depressed thrice majorly in lifetime, his father had similar symptoms died at the age of 65.
My husband fell10ft onto concrete, hitting his head, resulting in a serious concussion, this happened at ah
Primarily an electrician but involved in all phases of construction and remodeling, including gluing, painting. Worked at the railroad on diesel engines. High stress job as manager of all construction shops at Federal government agency. His father had some form of dementia. Stuttering from childhood to present (except when angry or singing), and dyslexic, i.e., seeing the letters in a word from right to left.
What i was having the symptoms for MSA was told by some doctors and family members that they were all symptoms of epilepsy or having for so long that this is what it had done to my body. also would say something to someone and they would say it was a sign of aging Made me think it was all in my head and the only one that could make a lot of the symptoms go away was me.have been a very nervous person all my life.by the time MSA was even spoke, had never yet heard of the disease.
6 concussions from age 15 to 32
wonder about COQ10.
He owned a porcelain fixture sanitation business in the 90's.
Exposure to pesticides like Agent Orange in Viet Nam.
Multiple injuries in car crash, 20 surgeries, both orthopedic and related to intestinal injury in the crash. Head injury, ptsd, headaches, all from crash. I worked in a building that was not properly ventilated during renovation on other floors. Strong toxins where used to clean marble walls (old government building, lots of marble)
when I was first diagnosed with Parkinson's my employers seemed determined for me to quit
He worked in farming and landscaping all of his life where a lot of chemicals were used especially insecticides and herbicides.
whiplash requiring treatment due to auto accident 30 years before onset of symptoms
fell off a school roof at the age of 11 hitting his head and had a concussion for the day, maybe longer. No doctor was seen. High stress at the work he did.
my husband was exposed to agent orange when serving in Vietnam. He fell down the basement stairs 4 years prior to symptoms and was hospitalized overnight with a slight concession.
Going over the handle bar of a mountain bike hitting my head on the pavement. My helmet was cracked.
He worked overseas in the oil field first as a rig diver then as a production tester as well as four years in diesel submarines
Stress at work and home
Individual had a house with mold from 1999-2009. Some relatives (not parents or sibling) had Parkinson's Disease.
MY father had Parkinson’s' disease
Neck injury playing football. Was put in traction in hospital. He worked at General Tire making tires for a couple of years. Was exposed to toxins in cleaning liquids during his work at Morgan Auto Parts. Has always tested high for metals in his body.
Worked a very stressful, demanding job and during the many years on the job, did have some exposure to chemicals.
In Vietnam on Navy ship exposed to toxins
Car accidents, skiing accidents. Work stress, home stress.
Patient's mother and maternal grandmother had Alzheimer's Disease.
Extensive exposure to Agent Orange in jungles of Vietnam 1968-1969 at age 22.
Stress at work Environmental dumping
Patient had petit mal seizures as a child. Maternal grandmother had Parkinson’s.
3 of the 4 boys of the family had MSA symptoms the last boy who has no symptoms was not exposed to Agent Orange.
given original infection by doctor - admitted infection and named. played ignorance when infection spread to my left foot/ankle, which was swollen, and I was on crutches. Doctor said I didn't have to see him again, but four days later, woke up and I couldn't put any weight on my other foot. Saw another doctor who looked at my feet and wanted me to go to the EM. Went next day and white blood cell count was high.
none
Played high school football 2 conclusions lost consciousness once worked in the auto service industry from the age of 17
He had fractured his skull in 1984 and did suffer brain damage it had caused him to suffer seizures, and short-term memory loss
My husband worked for a vengeful and nasty father-in-law. My husband subsequently bought the business which was heavily in debt. My husband was a highly responsible man who worked very long hours, often around the clock, to keep the business going and pay the bills as well as his employees. The business was unionized with two unions to contend with. Often their demands were beyond what we could afford but we had to comply or stop production at a time when business was at its peak. Year after year I saw my husband more tired and with a defeated appearance and attitude. Years before dx he was always tired. He had lost the spark and joviality that he had when we married. The children said that they remember their dad as always being tired. My husband was not one to share emotions, talk about his feelings, so the stress was held in and became part of his daily life. He had little time to do anything pleasurable.
The first symptoms appeared after surgery
transverse Myelitis was diagnosed about 10months before diagnosis of Parkinsonism....
Poor diet Multiple falls possibly due to alcohol lack of regular exercise no stress management
I lived with a husband with bipolar for 20 years who refused to take his medication and also worked as a teacher who was often given troubled children to deal with.
Father diagnosed with Parkinson's disease Approximately one year prior to my being diagnosed with MSA. I have been receiving medications for bipolar disorder since the age of 18. Very stable until rapid menopause 9 years ago. Had severe manic episode, was hospitalized, then crashed to severe depression, received 32 bilateral ECT treatments, lost all memories of about 4years prior to ECT. Short term memory slowly improved to almost normal, then symptoms of MSA took over
not sure how much the stress was external vs. idiopathic
Treated for undiagnosed stiffness of neck, unable to turn head, 5+ years before diagnosis
Worked as a farmer, exposed to various chemicals, ex: spreading fertilizer without any mask, agitating slurry without a mask.
He worked with all kinds of chemical s and toxins his whole life.
I have looked after myself since I was 13, now 66. Am single and now miss not being married. ('m too young to die.
He has had cluster headaches since he was 27
little detailed memory, polio outbreak in England in the 50's I contracted with sugar cube vaccine drops. Wheelchair left side of the body affected as in MSA.
I did a lot of welding was around dolt of toxins was also hit by a train in 1996
For 18 months prior to diagnose I got dizzy on a regular basis when I got up in the morning. Past 12 months I have had issues with my writing, occasionally would drag my leg and my right hand started to tremble.
Worked as mechanical engineer -exposure to chemicals. Two adult male cousins diagnosed with Parkinson's Disease or 'Parkinson's Plus (not defined as MSA). All three born and grew up in Maine.
mot today
old job resigned after 20 years, started new job, marriage fell apart after 30 years, sol d family home, bought new home. cat had to be put down I did it he was 18, son told me he was gay, children left Brisbane for Sydney and Canada so am alone although close to kids
hi stress job as independent midwife
24 years prior to being diagnosed, my father suffered a major head trauma through an accident at work, causing spinal and neck injuries, he spends a good bit of time in hospital to recover. And a long time at home after recovering before retiring to work again.
My Grandmother (mom's mom) had been diagnosed with late stage Parkinson's while in a nursing home yet in her late 80s, she lived to 94 years old...what we know is Mom went thru the same thing as Granny, but at an accelerated rate.
In 1970's, we used a chemical to "fog" pastures. Attached a tank to the tractor's front. Reduced insects, but the tractor driver would drive through the fog because of the tank's location. I don't recall the chemical. We used it for several summers. No one ever became sick at that time. Lawyer for 20+ years. Litigation with law firm, then in-house, which I enjoyed, but was stressful.
Played hockey all his young life and up to 35. Played golf until just prior to diagnosis. Had a steel beam fall on back when in 30's but went back to Physical work 3 months later...was a very active man. Building houses and was an electrician.
Worked as an auto mechanic for many years
He was a chemist for at least 7 years
Numerous surgeries.
Mother had Alzheimer's
She fell backwards from a short step in church, severely spraining an ankle and receiving a concussion, 2 years prior to diagnosis of a Large demyelinating brain lesion, which was thought to be cancer. No changes to MRI over 5 years, so diagnosis changed to brain injury.
Ag chemical salesman
Lived by barrels of toxins and breathing in insect spray fog back in mid-1970's
For years, my spouse was in a demanding broadcasting job. He worked long, stressful hours, 5-6 days a week.
Car accident in 1973 which knocked me out and caused a concussion. I used to have migraine headaches, but they stopped without any clear reason. I am a lawyer so had a considerable amount of stress in the practice of my profession. I retired for medical reasons last year.
Worked a high stress job requiring stress and >60 hrs. per wk.

In the past/last year, how would you describe the rate of progression of the individual's MSA illness?

(1) very few signs of any progression in the past/last year

2.6%

(2) some subtle signs of progression in the past/last year

8.4%

(3) definite signs of progression in the past/last year

389

49.1%

(4) rapid progression in the past/last year

306

38.6%

Please add any comments related the individual's rate of progression in the past/last year:

She passed
Speech and balance (walking have seemed to gotten worse
Had a difficult time during pregnancy. Delivered 2/19/13 at age 43. All symptoms were greatly exaggerated during pregnancy and Parkinson's meds had to be increased to retain mobility and stop cramping. Started neupro after delivery and meds were decreased back to close to previous levels. Symptoms have worsened since then. Increase in Sinemet and neupro last month.
blood pressure is becoming increasingly unstable as is heart rate. Losing more control over bladder and walking even with cane is much harder. Talking is much harder and being understood is much more difficult. Choking is more of a problem and getting worse. I have lost more fine motor skills and cannot use one hand almost entirely.
Last year used a walker now in a wheelchair most of the time Speech getting worse
He died in 2012.
Dystonia is worsening as is my blurred vision and balance issues
Worse dysarthria Increased loss of balance Poor walking Dizziness
Pain in legs and feet worsened, with daily exercise walking ability fairly stable except when tired. Neurologist prescribed Madopar recently “to try to reduce restless leg pain symptoms”. 125mgx2 daily 4 & 8 pm. Has helped. Not having awful leg pain in night and mornings as much.
Musilli
I seem to have a new subtle symptom each month or so.
Rapid since October 2013.... Especially cognitively
Balance issues have worsened Speech is worse Over production of saliva has worsened
No walking, we need to rectally remove her bowel, unstable emotionally extreme fatigue etc!
More frequent episodes
Required insertion of supra pubic catheter Chronic constipation and loss of muscle tone affecting defecation Muscle wastage despite physio routine Worsening Parkinson’s symptoms with debilitating fatigue Require two-wheel frame with sliders in home and wheelchair for outings due to Parkinson’s symptoms and balance impairment as well as BP fluctuations. Postural drop, bradycardia. Autonomic dysfunction Swallowing problems. Tolerating small amounts of moist minced diet. Cranial nerve dysfunction Gastroparesis, esophageal spasm, nausea and vomiting Cognitive dysfunction, confusion and memory impairment Require assistance with personal care and home help, cooking
More frequent spells of my neurological manifestation. At least twice a week minimum.
is full care. unable to walk, speech difficult to understand and has problems sometimes choosing the appropriate word, supra pubic tube inserted 8 months ago, chronic issues with bowels, very slow, struggling a little with swallowing, tremors,
More difficulty with walking and balance. I wear a brace on right leg and use walking sticks. Now use a scooter if I am shopping. More falls. More cognitive changes, trouble focusing one more than one thing, forgetful and some confusion. Biggest change is greater fatigue, spend most of the hours of the day lying in bed.
I saw Dr. Novak in Worcester, Ma April/2013 At that time he put me on carbidopa& levodopa for which it didn’t help so i stopped taking and didn’t know i was supposed to ween off the drugs. I fell while getting out of shower, couldn’t get up and ended up in the hospital for a few days... since the fall in a weakened state, I've never got back to cond prior to going on those drugs & getting sick,
Hospitalization seemed to increase symptoms
There was 2 yrs between the sleep disturbances and gait disturbance, with eye, Speech, fine motor skills and bladder problems following quickly
Actually, it was his last two month he progressed very fast. Went to his dr. At the end of Aug., and he passed Sept. 17th, 2013. His meds just did not work, he could not eat, swallow, could not use walker and could not even strong enough to stand with help. His breathing was shallow, on oxygen. Since seeing the doctor in August. He went less than a month and he was gone., he went into, a coma last 24 hours. He was on morphine the last 4 days., all meds were pulled when the doctor said they were not working anymore.
Stridor breathing, many falls and more of the progression in the symptoms they already had.
After an extremely stressful eight weeks, I woke up with new symptoms of choking, slurring, hoarseness and shuffling gait and respiratory insufficiency. This happened overnight. My older symptoms were much worse.
From being diagnosed last year in Jan 2013, she was walking by herself and talking. She now can't talk and goes everywhere in the wheelchair and has huge difficulty trying to get out of her chair.
Speech went, couldn't walk or stand, swallowing got worse, nil by mouth, on oxygen to help him breath
His mobility is much more compromised; hence he has become far more dependent on my help. He can no longer do all the myriad chores he used to do to help me around the house. Cannot lift his grandchildren or play with them anymore. As making himself understood is difficult, he doesn't like to talk on the telephone anymore, and he participates far less in general conversation.
I was only diagnosed 13 months ago with Parkinson’s /mild case. Symptoms did not improve with sinet and went for 2nd opinion. Received second diagnosis in Nov/2013 of MSA. In this past year there has been a definite change in my balance and walking. /Before slightly off balance.... now need to hold on to someone, use a cane. I do better now with the bladder, insomnia.
She only lived for about a year after diagnosis
It was a slow progression of symptoms until this last year. Diagnosed with MSA informally in February and told in August. Since then the decline appears to be steady.
Hard to walk Hard to get out of a chair Hard to get in and out of bed Swallowing sometimes a problem Very tiny writing Voice comes and goes Falling
I had a fall in June 2013 that led to a "mild" concussion, but it worsened all my symptoms. Then in late November 2013 I was hit with back-to-back incidents of Shingles. This produced new symptoms (Raynaud's, and serious neuropathy in arms, hands and feet), as well as worsening existing symptoms. I am using a walking stick for the first time since diagnosis, to help with balance especially out in public, and/or when fatigued.
New symptoms keep appearing.
None of the signs found before 3-4 years( except shouting while asleep), fit enough to walk daily 4-5kms and cycling, everything started happening rapidly, increase in fall, faint(after 2-3 years diagnosed postural hypotension), urinary bladder disorder, bowel disorders, slurry voice etc, rigidity, lost the strength to get up without using hands if set below knee level, HE HAD IMPROVED IN LAST TWO MONTHS - constipation ( ayurvedic medicines helped) , urinary incontinence( urimax d helped), electric/tingling pain in legs( delok 30 helped), slurry speech ( with the help of physical therapy also had moderate to severe cervical disease too), He died within 3 years, though yet to get confirmed MSA_P ,autonomic test left undone, he had fever and cough in his last 2 days.
Too rapid
He recently suffered a serious gastrointestinal issue that hospitalized him for 10 days. While there he contracted a UTI. The medications, especially Flagyl, made him out of his mind among other things. He did not fully come back from that event and is now required to be on Flagyl again. The medicine is working but the side effects are devastating. He can barely stand let alone walk, and last night he was hallucinating. If he can come back this time, I know it will be weeks, and he doesn't have that many weeks to spare.
in the past 2 years went from a minor ear infection and being called drunky as a joke by neighbors to seeing more dirs. and types of drs. than i have seen my whole life and having MSA which I had never heard of. Drs. should know that there is such a disease even if they haven’t got cure yet. they haven’t got the cure for cancer, yet they know they have cancer. Not knowing is harder on me than knowing what is wrong. Plus, you can deal with having MSA. People know what Cancer means. When people say MSA all you hear is “what’s that"?
While he has been having increasing difficulty in the last couple of years now, he cannot walk or talk. In the last few months he has lost control of his bowels, his hands have become very rigid and he cannot raise his arm to indicate yes. He has trouble swallowing and occasionally breathing.
Stopped driving.
He was hospitalized for serious bronchitis, pneumonia and possible flu during which time he was very close to dying. He recovered remarkably well but not to the pre-pneumonia state.
Weaker, using walker and scooter completely, loss of bladder control, eyes dry/tear, breathing difficulties, a meow sound upon exhale. Forgetfulness, emotional, tired easily. Balance off. I walk like I am drunk and have tremors when I am doing something g, no so much when I am still.
Received diagnosis in 3/13 and since then has lost more mobility, worsening swallowing and speech problems, incidence of infections increased, incontinence worsened, body's ability to regulate temperature has also worsened, head tilt and Pisa syndrome have become more pronounced
Motor skill drop too much, can't walk any more.
balance problems have increased walking difficulty has increased tremors vision problems good side is almost as bad as bad side trouble picking up and holding objects speech problems
Once he began to having issues swallowing, all of his voluntary movement was greatly diminished. Immobility led to more depression and a desire to give up.
I am scared.
Patient is no longer living but did have plateau without much different the first couple of years. In the 3rd/4th yr. definite signs of progression. Last year rapid progression.
Due to Maureen's denial & as previously stated lack of therapeutic interventions, her progression was quite rapid to me (due to my knowledge & acceptance of this disease) & I noticed more than her husband. Unfortunately, he thought I was over reacting & disregarded suggestions to aid her.
My husband survived 7 years after diagnosis, 2 years prior to his death he was bed bound and had to be transferred. He could not stand. At this time, he also had a superpubic catheter put in. 5 days before his death he had a feeding tube put in.
Because of my loss of balance, in less than a year I progressed from using a cane to a walker very rapidly. When I go see my doctor for appointments, I use the wheelchair to facilitate time.
He was less and less able to talk, move, care for his self, aspirating on food and liquid and finally could not move and finally died of respiratory failure.
Progression becoming more rapid since the beginning of 2014.
He was diagnosed in August of 2013 and has continually lost weight. Now at under 119 lbs. He is in a wheelchair and cannot walked by himself for quite a while. He is unable to feed, dress or bathe himself. He has lost volume in his voice and is hard to understand. His mind and memory are still amazing.
In the last year, the ability to walk more than few feet without losing balance or falling became difficult. Mostly used a wheelchair. Had to be on oxygen full time. Breathing, coordination, strength became extremely labored.
In 2011, he began fainting and having seizure-like symptoms while unconscious. These episodes increased over the next two years. He his is head sometimes, but never had an injury requiring stitches or band aids. In January 2013 he collapsed twice within 8-days breaking the toilet both times. He was formally diagnosed on July 25, 2013 and passed away May 2, 2013. He went from being able to be left alone at home or at Starbucks where he could order coffee and breakfast and read the newspaper in early July to being unable to read the newspaper or other printed materials by November 2013. He could not fold clothing, dress himself or feed himself by December 2013. By the end of January 2014, he had bouts when he could not understand language or move by himself.
Most recently he had steep decline after death of his brother.
The last year of patient’s life was in rapid decline. Lost over 100 pounds, could not communicate even with the help of communication aids. Wanted it to be over.
March 30, 2013 - first serious symptom .... trouble walking. By September 3, 2013, he was admitted to a nursing home due to being unable to walk or take care of himself. His home was not handicapped accessible. Unmarried with no one to help care for him.
He was showing very little signs and within 7 months has gone from walking to wheelchair, speech low and slurred, all fine motors skills gone, short term memory greatly affected, vision affected, stridor breathing, choking on own spit, severe headaches and pain in his arms and legs, frequent mood swings,
increasing uncoordination. High risk for fall
7/12 began to experience freezing of gate now 6/14-wheel chair/ scooter bound
Choking on food, very severe sleep apnea, he had severe blood pressure drops
My husband has been dead since 1994.
My mum now: can't walk anymore, can't write anymore, can't cook anymore, struggling with swallowing, less and less able to talk, sometimes can't find the correct word, sleep apnea, bladder problems going worse.... :'(
pretty quick progression, from stomach nausea, to balance problems, to falling, to hypotension, fainting, completer lack of energy fatigue,
Diagnosed with SBIO small bowel intestine overgrowth as an extension of the gastroparesis. Not able to walk much at all anymore.
tremors, temporary pausing, diminished mental capacity, anxiety, memory loss, fatigues easily, loss of strength, flexibility, loss of motor skills. got a suprapubic catheter but still experiences frequent UTIs. rarely walks unaided, uses sticks and wheelchair, spends more time in bed
Progressed from walking with poor gait unaided to walking with stick, speech has become slurred, handwriting nearly illegible, more frequent faints/falls.
Nausea has worsened, and regularly vomits after eating. Went from walking with walker this time last year to wheelchair all the time now. Can't even stand with aids now due to imbalance.
Old neurologist retired. New doctor treats only Parkinson's patients. Discontinued all medication. Said it was psychogenic. Referred me to PT, psychiatrist and biofeedback therapy.
Wheelchair bound, double vision if his eyes were open, said it was like being drunk and room spinning. So, my dad kept his eyes closed a lot. He would have attacks of having a hard time breathing and shake for hours, so he would always have to grab my arm and hold it the whole time until it would go away.
My rate of progression has forced my Occupational Therapist to question my driving and ownership of a mobility scooter, causing much angst in getting around. Except for a Category 4 Gov't Package which allows for a part time carer.
She would stay at a certain stage then suddenly drop a level so to speak. She had trouble eating then suddenly food had to be almost liquid, speech went from a whisper to not able to talk at all, she could use her arms somewhat then it seemed overnight, she could no longer lift her arms/hands to scratch or whatever to her face or anywhere.
Christmas of last year I walked unaided, now I can hardly walk with the aid of a walker
walking and talking rate increased rapidly
I am not able to work. Frequency of dizzy spells has increase to several times during the day. I need to focus on my walking, or I'll trip. I have to take several breaks during the day including at least one nap. I'm on edge driving. Easily distracted. Difficulty focusing.
balance
since diagnosis in oct 2014, mobility has declined, walking is more difficult and i need aids such as a stick, walker wheelchair and mobility scooter
The last year the rate of progression has been rapid, major weight loss, unsteady, use of walking stick and mobility scooter and the left side the body is very slow to get motivated, sleepiness is also become a big problem. It's only been 4 months since conformation of MSA
Moving to electric wheelchair from manual wheelchair, because of increased muscle weakness.
Has become much slower. More fatigued. Speech very slurred. Uses a walker and a scooter. Cannot walk very far so uses scooter more often. Sleeps much more off and of. Has more difficulty turning in bed and getting up and down from chairs. Feet swell so has stockings on most days.
Went from working and driving in 5/2013 to dependent on a walker 5/2014. To electric wheelchair and walker only with someone standing by in 4/2015. Speech progressed from slurred 2013 to hard to understand 2014 to unintelligible 2015
walking, unstable, appetite, sleeps more, more insecure. asks if he is getting worse. cognitive ability less. talks less.
Much weaker and slower.
Hearing loss.
She had plateaued until 5 months prior to death, when shortness of breath began. Took 4+ months to diagnose the paralyzed vocal chords. She died 4 weeks after, refusing to have a tracheostomy.
At age 90 I experience more aggressive dizziness and headaches.
I lost my voice over a year ago along with paralysis of vocal cords. I have a feeding tube due to slow digestion with two ports of a feeding tube. As noted above with loss of voice, I have a communication device.
Progression was worse in the first year after diagnosis. Then it seemed to plateau. Now, the progression is - as you put it - more subtle but continuing.
My balance is a real issue. I barely sleep and don't take sleeping pills because they give me nightmares. My cognitive impairment hasworsenened considerably.
steady waves of symptoms that come on strong, then weaken as the symptoms are addressed - example: speech treated with speech therapy
Had a fall and got detached retina so hard to tell over last couple months
His head bobs and at times he cannot communicate at all.
Slow progression.
I noticed a big change about 5 months ago. In told my neuro. That and he said he could not notice any change. Switched doctors!
He was able to sit for long periods in his wheel chair, capable to walk a few steps with the physiotherapist's help. Now he is confined to bed, legs bended (unable to straighten them) Choking and breathing difficulties are also an issue. Unable to move arms and hands
passed away in January of this year.... last year speech was getting worse every day, unable to walk even with a specialized walker, hard time eating
2014 Dec. Walked with a walker. Dec 2015 bedridden. 2014 Dec. Great communication. April 2015 very bad common. 2014 Dec self catharized. Bm in toilet. Aug 2014 Enema to have bm. August 2014 Foley cather.
Not sure how fast it is progressing any changes have been small, but my balance seems to be getting worse

Living Conditions:

Does/Did the individual receive adequate support to live comfortably?

yes

695

89.7%

10.3%

If the individual does/did not receive adequate support to live comfortably, please indicate what is/was lacking:

individual has/had no caregiver

18.6%

caregiver is/was unable to meet the individual's needs

21.8%

individual lacks/lacked financial resources needed for adequate care

106

67.9%

individual lacks/lacked financial resources needed for adequate care

106

67.9%

individual lacks/lacked access to knowledgeable medical care providers

36.5%

individual lives/lived at a great distance from medical care/support

15.4%

individual refuses/refused assistance

3.2%

Other

28.2%

Transition Issues:

If the individual was lost to MSA, how long after MSA diagnosis did he/she live?

one year

3.8%

two years

9.8%

three years

24.8%

four years

12.8%

five years

10.5%

six years

1.5%

seven years

3.8%

eight years

3.8%

nine years

5.3%

ten years

5.3%

Other

18.8%

If the individual was lost to MSA, please indicate the cause of death:

Respiratory failure (stopped breathing)

30.9%

Respiratory infection (e.g.: pneumonia)

26.8%

Respiratory blockage (choking, obstruction)

5.7%

Heart attack

0.8%

Stroke

1.6%

Other complications from blood clot(s)

1.6%

Digestive system failure (unable to digest food)

1.6%

Digestive system blockage

11.4%

Head injury due to fall

Other injury due to fall

Other

19.5%

If 'other', please state:

Liebe
respiratory failure
Death certificate states Shy Drager
Wisconsin
COPD heart failure aspirational pneumonia
OR
Colorado
CA
Lancashire
Oregon
IA
Florida
Michigan
Cardiac arrest
US
Dad had triple bypass operation at age 45.
Not yet
Decline
AZ

If the individual was lost to MSA, what was his/her age at the time of death?

20-25

26-30

31-35

2.3%

36-40

0.8%

41-45

46-50

3.1%

51-55

5.3%

56-60

14.5%

61-65

27.5%

66-70

22.9%

71-75

16.8%

76-80

4.6%

81-85

0.8%

86-90

0.8%

90 or older

0.8%

Has/Had the individual made arrangements to donate his/her brain to an agency for research?

525

80.3%

Yes

129

19.7%

If the individual has/had made arrangements to donate his/her brain for research, please identify the agency to which the donation was made:

Mayo Clinic
Mayo Clinic
University of Michigan
University of Florida brain institute
Washington university School of medicine St. Louis Mo
The Brain Bank at Queens Square London
Mayo Rochester
Florey Institute
UT Southwestern
Wants to set that up very soon
not sure yet
national
BMI through driver’s License
BMI Driver’s License Indiana
Planning to make arrangements to donate brain to Mayo Clinic Jacksonville, FL
cannot find a place in Canada for brain donation
We are in the process of arranging donation
My dad wishes was to leave his brain to msa but unfortunately, he's was left out longer than 4 hours, so we were told they could take his brain which really upset us all as that was my dad wishes
I want to donate my brain for study, but I don't know who, to contact.
.... but I intend to and must do the paperwork ASAP!!
We were supposed to see the dr about donating brain, but he died about 15 hrs. before his appointment!!
On my to-do list.
Massachusetts General Hospital, Boston, Ma
Oregon Health and Sciences University
OHSU, Portland, Oregon
Penn center for neurological studies.
Mass General Hospital
I don't have that information.
Alfred Hospital Neurological Section
University of Miami Medical School
uc hosp Cincinnati Ohio
I plan on donating I just need to see what paperwork I need to complete.
The family would have made arrangements for donation if asked, we were not asked (treatment at Vanderbilt, Nashville, TN last 2 years of life)
not yet but I will
nz Brain research
Something discussed with the neuro and wishes added that when the time comes, he wishes to donate.
Not sure yet. Plan to do it soon
It was a hospital in suburban Cleveland, but her son was queasy about the procedure and stalled it until the point where it was too late to donate. The single thing my wife wanted out of having the disease was ruined by an ill-informed, ignorant relative.
CurePSP brain bank
Mayo, Jacksonville, FL
NYU
He lives in a rural area and there is no one in the small town that can do the necessary procedures.
U of M
We would like to. Don't know the process.
Www.brainbank.mclean.org
Mayo clinic, Jacksonville
Im happy to do this but I wouldn't know who, where etc just yet. Don't feel sick enough for it to be a priority. We are currently working on our family trust, so I guess I'll need to find out then.
Australian brain bank
Not 100% sure
Dalhousie University, Halifax, nova scotia
None specific.
Harvard brain tissue research
Mayo Jacksonville
She wanted her brain donated through MSA Coalition, but her son was in charge at the time of death and was 'squeamish' about having it done. The delay in the decision process made the donation impossible.
Mayo Clinic, MN
I have the paperwork, but it would be too expensive to do it.
This has yet to be determined, but she will donate her brain for research.
university of Saskatchewan neurology brain bank - bank was unable to accommodate bequeathal
We want to find out how or where to donate my brain for research. My PCP does not have this information.
Initially COLUMBIA Presbyterian NYC.
Dr Lowe. Mayo Rochester
American brain foundation, I think. I can check if needed.
Originally Yes. However, 2 factors changed my mind. 1. Created more stress for spouse on what would need to be done, causing more anxiety for me. I assured the spouse it was nothing but filling out paper work ahead of time, giving to proper people and making 1 phone call upon death. 2. Originally was going to donate brain to University of Michigan and have autopsy of spinal cord. Given decreased confidence in University of Michigan, number 1 above and my lack of motivation have not moved me to follow up with other brain donation sights.
plan to do so
He plans to make arrangements to do this as the disease progresses.
NYU Langone Dysautonomia Center
University of Miami
Mayo Clinic Jacksonville FL
I don't remember
Family denied
Hershey Medical
Northwestern University - through Dr. Cindy Zadikoff
It is under discussion for us at the moment
Dr Lowe mayo clinic Mn
still looking into it
None specified at this time
Queens London
University of Western Australia
However, we would definitely be open to this at that time, I will be sure to mention to our Neurologist if we haven't already .... I think we did so.
University College London
Agency located at upmc Pittsburgh
MSA Foundation
Dr Brink, Stellenbosch
Beth Israel / Mount Sinai
Mayo Clinic’s Rochester MN
University
Early we had it worked out with Mayor, but the process to pick up and deliver changed and I as a full time 24/ caregiver did not have the time to work out a new process!
She wanted to donate her body to Science for research to Oregon Health Science University, but they declined her body stating she was overweight.
Mayo Clinic - FL
Koo
Mayo
University of Pennsylvania
UCLA
I’d like to donate her brain though
Mayo Clinic, Jacksonville, Florida
mayo clinic brain bank, Florida
we would like to but don't know how to go about it
How do you do that
still looking where to donate

Does/Did the individual with MSA support a "patient's right to die?"

10%

yes

420

58.4%

uncertain/undecided

227

31.6%

Please note: If the individual experienced multiple head injuries either before or after MSA diagnosis, please refer to the dataMSA Survey: Multiple Head Injury Factors Pre/Post Diagnosis.

Your comments:

Please feel free to add comments, observations and experiences which you feel may be helpful to others who research, educate and raise awareness of MSA:

MSA is really in the ALS family not Parkinson’s
There is really not enough information out there about MSA, we had no idea what this disease was until my husband got it! Went from dr to dr place to place trying to find out what was wrong with him. Doctors that know nothing about this disease (That needs to change, we live in Louisiana and it’s unbelievable that our state doesn’t have a clue about this. Very few very few Drs here know even what it is. I sent a Proclamation to Our Governor John Bell Edwards to please proclaim March 2918 as Awareness Month to help get the word out still waiting to hear back. This disease destroys your life. It’s not cheap to have, so much is needed in order to take care of someone with this and not a lot of resources out there to help with it!
It’s not "all in our head".
Doctors including Neruros know next to nothing about MSA. I find that appalling. It is time that the word gets out to the teaching hospitals about it. I'm tired of having to go to an emergency room for a problem that flares up and no one knows anything about it and their data base still calls it shy-dragger and has half a page of nonsense. We need to get information in their hands to save some lives. I have lived with this a long time and hope to continue to do so but the doctor community needs to help more. Sorry for the typing but it’s hard to do one handed.
Our family is very supportive of my choice to utile "death with dignity", have it in writing u
I never realized how much pain, he was in at the time of his illness, and I feel once he got the feeding tube he started to give up.
Recently diagnosed. Please help to save my life.
Patient was misdiagnosed with Parkinson's in 2006. Was diagnosed with MSA in 2010. Passed away in 2013 due to inability to either swallow or eat. Did not want feeding tube. Also had chronic bladder infections the last four months.
There is a lot of confusion regarding symptomology of MSA. More education amongst medical professionals is needed. Cognitive dysfunction and memory impairment make it difficult to be able to express yourself and be specific about symptoms etc. need to have someone with you at medical appointments.
Because this illness is rare and presents differently with each person, neurologist in particular seem to have no knowledge of it and are unable to make a diagnosis.
Improved education of GPs in MSA required
In our country (South Africa) there doesn't seem to be any follow-up post diagnosis. My husband was finally diagnosed after 18mths of tests, scans, MRI's and second opinions, and then basically sent home and told nothing more could be done. We (family members) did our own research online, joined an MSA support group on Facebook, thereby getting in touch with other MSA patients in our country. Our support group is made up of friends & family who come on a rotational basis to do speech or exercise therapy with him, or just to chat about work, his previous sport (squash) or news events.
I am experimenting with a variety of integrative therapies in a controlled manner. Understanding possible causes helps to direct the pathway one chooses. I do not know that answer, but possible considerations are pleomorphic organisms, previous injuries, exposures to toxic, etc. When the symptoms started, I had Lyme’s disease. I also had neck problems as previously stated and I also worked with some chemicals in earlier years. In addition, I have had a hair analysis done and it came up with some heavy metals. I believe there is something to detoxing the system that I will be doing. A friend of mine who has MSA once told me the only time she felt disease free was when she had a colonoscopy. Something to think about!
My mother lived in Belfast N. Ireland We feel no one knew much about this Disease only one consultant even the middle aged family doctor had never heard of it, it was very frustrating knowing there was something wrong but no one knew what or what to expect next we her family got most of our information on line, my mother couldn't except this illness her whole personality changed she was very depressed and we felt we got no support from anyone because it was so rare they couldn't tell us what to expect next, the worst part for her was the bladder and bowels problems and for us it was knowing how much thickener to put in her food we were scared of her choking all the time, she died in her sleep she was snoring loudly then it just stopped and she was gone.
The beginning started with an infection, at which time the bladder issues started. At the same time, he became hyperthyroid (like hasimotos) and then hypothyroid. i would describe flare ups almost like an autoimmune disorder. My husband appears to be calm, but it is almost with the stress of situations, I can tell the symptoms are increased (bladder issues and stability). I do feel like when his diet is high in carbs (even natural carbs) he tends to become more symptomatic.
I'm struck by the differences in presentation and outcome of people with MSA-P vs. people with MSA-C. I think this makes it confusing for doctors, and patients. As an MSA-P guy who has clearly been so far dealing primarily autonomic related issues (as opposed to movement), I hope the autonomic disorder folks are sharing information across disease silos. I notice on Michael J Fox recently a focus on "the other issues caused by PD, and they list out all my MSA-P autonomic issues...so again, the confusion and the need for cross-silo collaboration.
More research needs to be done and brain donation is very important. Also, to donate my brain in Canada where I received my dx, it would cost my daughter money. If we are willing to donate our brain, there should be no cost. Awareness of this disease is very important! A good support system is important. Doctors should tell people more about the disease when dx'd. I was told the day I was diagnosed that I had MSA. I would end up in a nursing home and go home and look it up on the computer. Written materials need to be available through your neurologist. I found this a very stressful way of learning about MSA. I have also offered myself up as a teaching patient for the medical studies of neurologists at my hometown university
My father had fever and cough in his last 2 days, he was getting better before that for the past two months.
More info needs to be available
Doctors don't seem to know much about this disease
His symptoms began 15 years ago when he was 75. For him 75 is not old. Paxil and Florinef kept him stable and active for 10 years. At age 85 I noticed that his considerable muscle mass disappeared seemingly overnight but probably within 2 months. He began to have strange sensations in his legs. His determination to find out what it was took him on a 3-year journey of discovery through a dozen doctors, and straight into MSA-C. He's 90 now and just last month he was helping my daughter lay sod. His longevity tells us not everyone dies within 4 - 6 years.
How does a person prepare for what is to come next with such a disease? We all know that sometimes we are going to die. Not knowing you have symptoms to finding someone dead with a rare disease is a lot for anyone to handle! Even a well person.
there is a lot of focus on the physical issues of MSA but i believe that there are cognitive issues that need to be addressed. I believe that there are issues with impulse control, executive planning etc that patents and carers would benefit form information and support.
His first diagnosis of cerebellar atrophy was in 2000. A fall resulting in a fractured hip put him in a wheelchair in 2008. He has a very strong will to live and continues to enjoy life despite being in the late stages of the disease.
Disease has so many negative features it's difficult to explain all that happens. Every symptom gets worse over time and for the patient and caregiver this is the biggest challenge.
When airlifted to a hospital in the city, I had to educate the doctors there as to what MSA was and the reason he suddenly stopped breathing. Doctors could not understand why he could not breathe yet his heart, kidneys and other organs were healthy and functioning. He could also respond to them when asked yes/no questions despite being intubated!
We are so desperate in Australia to find a Neuro that will accept MSA or any Parkinson's + condition without feeling that because it can only be 100% confirmed post-mortem, that they would prefer to sit on the fence. I have passed on the link to the "Second Consensus Statement" to specialists that were involved in my sister's treatment to help make their own decision, but I have felt that it was a waste of time & my remarks were always brushed off. I met & dined with Prof Gregor Wenning & his colleagues last June in Sydney at the MDS Conference & I am so proud of all the work he & his team do in trying to find a cure for this horrid disease as well as all the other researches worldwide. I will continue to do my utmost to raise awareness in Australia, now more so in Maureen's honor. Thank you so much for all that you are doing & I truly hope that in my lifetime I get to see a cure if not a treatment to help MSA patients. Regards Linda Williams
I am willing to donate my brain to find out what caused me to have this terrible disease and to help find a cure to prevent others not to have this.
My mother was initially diagnosed with Parkinson's Disease at age 41 (after beginning to experience shoulder pain, finger tremors, and incidences of tripping and fainting). It was 3-4 years later, after rapid progression of the disease, that she was diagnosed with Shy Drager Syndrome. From the time of her original dx of Parkinson's until her death was 7 years. She spent the last 1.5 years of her life in a skilled nursing unit. She had a tracheotomy, ileostomy, urinary catheter, and feeding tube. She was unable to speak and was confined to bed.
As caregiver, I appreciate talking to others who have experienced caring for someone with MSA and giving me some insight on what to expect or their experiences. It's a shame we do not have more neurologists interested in caring for MSA patients. Our primary care doctor admitted he didn't know a whole lot about MSA but would be with us thru the journey. For this we are thankful!
In my husband’s case, progression seemed slow and manageable for first three years. Progression was much more aggressive last two years. I would recommend getting as much help as possible. Also, research the condition and make sure the patient has a good neurologist. Ask as many questions as possible. Educate yourself the best you can especially if you are the caregiver. Be as patient and calming as possible with your patient. Although this disease is probably just as hard for the caregiver and it's really easy to lose your cool sometimes. Keep things in a steady routine daily as much as possible. And for caregivers, be prepared. Life span is on average 7-10 years from diagnosis. I lost my husband at 5 years.
My husband asked for Death with Dignity and it was denied to him because he had a mild dementia diagnosis. PRN pain medication is NOT appropriate for MSA patients, especially when they cannot communicate the need. If Methadone is used, be sure to keep the patient of Tizanidine or increase the Diazepam otherwise severe muscle spasms, i.e. full body Charlie horse, can occur with MSAp patients.
medical staff needs to help prepare people and get much more info on disease.
live life fully & deal with complications as comes.
This insidious disease is like living through hell on Earth
Medical teams, including family doctors and ambulance personnel need to be informed of this disease
At the time Shy Drager Disease was diagnosed as an "orphan disease". Thus, there was little interest in research to find the cause and treatment. I am glad to see that there is more awareness today and that surveys are being done. I would be very interested in the results of your research and surveys. Diagnosis for my husband took many years. He was initially diagnosed as depressed. He was frustrated with that diagnosis and said he was depressed due to the fact that he did not feel good! He had major unnecessary surgeries at the same hospital simply because doctors in their separate specialties had narrow vision and did not look at the full picture. they focused only on his presenting symptoms that involved their specialty. Prostate surgery at age 46!! Wouldn't that young age, raise a red flag that perhaps something else is going on?!! Then during surgery, they remarked about how small the prostate was. Unfortunately, the results of the surgery were that he never regained full control. One of his first signs of SDS was impotence. He went to see a urologist. I had called the urologist in advance to tell him of the concern. The urologist (a male) was too inhibited to talk about the problem with my husband. When I called the urologist afterwards, he said he did not bring up the subject because my husband did not mention it!!! I could go on for pages about incompetent doctors, none of whom would take the extra step to put all the pieces and symptoms together to see the whole picture. He was finally diagnosed at Mayo Clinic via a simple sweat box test in addition to other tests. But the sweat box was the definitive diagnosis.
Prepared to donate organs.
Our mum has MSA, me and my brother are so scared...
Need to raise awareness. First Neuro at Cleveland Clinic suspected a form of dementia.
Thank you for helping fight this terrible disease.
Multiple disciplinary teams need to know more about MSA, Found very little knowledge even with the GP, physics, etc into treatments or even symptoms. It's a very isolating disease because of this as the people that should be able to help don't know how too.
Jill had stem cell therapy in 2006 and repeated in 2008. After 1st treatment we noticed several improvements in walking, balance and speech - the stem cell therapy included an intensive exercise program. On return to Australia in 2006 we converted our garage into Jill's Gym and continued to use it daily until she died. We had a professional physio therapist twice a week, a speech therapist once a week. Jill participated in a Parkinson's speech program at a local university - we continued the speech exercises on a regular basis.
It's important to note that the vast majority of us still have our thinking
There is not enough knowledge in the medical profession about MSA. Neurologists know about it but regular GP's or doctors in hospital pretend to know when they don't know enough and DO NOT LISTEN TO THE FAMILY. Awareness need to be made so it doesn't scare people. The person with MSA needs to be treated like a person and treated like they were treated before. Those with MSA are still there, they understand what is going on around them. The still get upset if they are talked about in front of them regarding them.
Something is needed for sure. Hospital staff have no idea what this is. I wear a medical bracelet just to be safe, even outside the operating room waiting for a kidney stone to be removed, the nurse had no idea what MSA was, a little scary. Should be a memo sent to every hospital worldwide. I sure I make it sound easy ans it’s not
We spent almost all of our father's savings to provide 24-hour care for him. We did this to provide him with the best quality of life possible and to delay admission to nursing home level of care. It was very difficult throughout his illness assisting almost all providers information about MSA from the level of physicians (other specialists included) to nursing and caregivers. Great strides have been made in increased awareness of ALS, it my hope that MSA awareness can be improved as well. I feel that my father would have had an earlier diagnosis or at least been referred to a neurologist by his PCP or cardiologist. An earlier diagnosis would have allowed for more financial planning and less medical crisis intervention.
I have no idea how to specifically donate my brain locally Putting in place a "do not revive" order and appropriate powers of attorney
I am trying to raise awareness of Multiple System Atrophy in Australia - I would be interested to know if any Australian neuros have shown any interest thank you for this awesome survey
My husband’s case started with impotence which we never went to drs about. Then urinary problems which was checked out for prostate cancer and when he was told he was fine the urologist said it could be a wiring issue...that was a very profound statement which turned out to be true. But he said it in passing.2 years later we found out it was a wiring issue when he faltered at writing is signature then getting tired and his walking gait changes. Then he was diagnosed instantly with MSA. Not Parkinson’s.
I don-t know how she has lived this long. Mind she is a fighter and won’t give into it
Pip is in the final stages of his battle. He is in bed 24/7 and has little quality of life. I hope your research helps. If you have any questions, feel free to email me. Bev
It is a sad state of affairs when a family, who basically sat on the sidelines for over a decade, comes in and muddies up the end of life for a patient and her caregiver of over 10 years. The family was NOT educated or informed of the many facets of the disease and interfered with the patients last few weeks of life. They were completely unaware of the cognitive issues she had, the inappropriate thinking and actions she was exhibiting, and her failing mental capacities.
I was first diagnosed with OPCA, olivopontocerebellar atrophy, later called MSA, multiple system atrophy. At first my doctors prescribed various drugs to find out whether they would help. None did. When I recognized that my driving was being affected, I stopped driving a car, and that was hard to get used to. I appreciate the computer and Internet, which keep me in touch with friends and the world in general.
I see evidence of increased awareness of MSA. It may be because we're living that world more. But I also believe there are signs that physicians are getting smarter about identifying the disease sooner.
Medical Marijuana has helped with tremors, pain and nausea!
Exercise as much as possible and move about even if you are bedridden like I am you can still Move around in the bed and there are exercises you can do in the bed. Use a walker as much as possible and wear a gait belt so your caregiver can walk behind you and hold on to your belt. If you Have falls don't try to use a walker alone. You can still fall using a walker without assentense.
I have seen 5 neurologists and none of them give you any information to use. If it was not for the. Internet I would have been lost.
He doesn't receive any help from the state/ insurance, except the specific medication. There are no specialists combined action to face the disease. His condition now is very delicate but has a strong heart. He doesn't want to die, he (still) expects to be cured!
MSA is terrible, it is really pissing me off because it is hard to think about the future in any positive format. So, I am becoming depressed which is really bad. Lucky, I have a beautiful wife and 2 very cute Mitsu puppy dogs who help me smile and be sort of happy
Medical industry and doctors need to learn more about this awful disease. More than several times we (the family) had to actually educate doctors, helpers, hospital & nursing home staff about MSA
None of the medicine for Parkinsowork for him
Most difficult is finding a good Neurologist willing to treat MSA... and help us get more help to understand this horrible disease. Most neurologists who treat MSA are 3-6 hours away. Some PcPs reluctant to take it on. Not enough awareness, education in hospitals, doctors, nurses, CNAs, and not enough trained professionals to understand how to treat or help someone with MSA. We were even turned away by an ALS Neurologist at the Movement Disorder Center in Charlotte NC. Said they do not treat MSA patients!!! Thought their oath as doctors prevented them from refusing treatment. Thinking about getting referral to Vanderbilt University for confirmation and more help in understanding what "not to do" and medications to stay away from. NEED for Neurologists willing to treat patients with MSA. And hospitals to train their personnel about MSA.
It seems that those of us with primarily autonomic dysfunction symptoms are difficult to diagnose since the revision and removal of MSA-A. I went to 3 different movement disorder neurologists who didn't want to classify this as MSA initially since Parkinson symptoms were very mild. I wasted a lot of time, and money trying to be diagnosed only to be finally diagnosed. Now being told I can expect to die at any time. I wish they would reconsider the classification system again.
I would like to sign up for clinical trials to help others with this terrible disease.
I would support a person with MSA who desired no or limited treatment but not assisted suicide.
In Australia at least, few people have heard of or understand about MSA; few Medical Staff at Hospitals are not well informed, and some doctors have only a vague notion of this disease Mostly they think it is Parkinson's Disease.
I don't really talk about it much as people feel really bad then uncomfortable cause they don't know how to react.
I'm glad to finally be able to contribute to a survey like this. My husband was able to donate tissue and eyes. Donation of brain would have been complicated and costly.
I am his wife. I noticed since the beginning something was wrong (Jan 2011). Since we were still dealing with my son's physical assault, I could not pay too much attention to his symptoms. However, we visited a doctor -not neurologist- and all the blood tests were fine. As he continued showing mainly physiological symptoms and some of cognitive area, we visited a psychiatrist thinking maybe on bipolar; but he said right away it wasn't that. Not until our need to go to ER, I started pushing doctors to go deeper on his symptoms. I've worked for more that 25 on educational/neurological fields and I knew something was going on; something big. Even though I had to push our neurologist, there was a time in which he told me that yes, something was progressing but not until the fMRI last Nov 14, he felt he could tell us it was MSA. I haven't known of anyone with MSA in Mexico. We know there is no cure, but we've been focusing on living day by day, enjoying everything we still have, and he has been working with healing on the emotional and spiritual path, so when the time comes, he is ready to leave on peace. This approach of the disease has helped tremendously. His anxiety is rarely seen, and he hasn't had any pain at all, which is great for him and for all of us.
Many Doctors, Nurses, and other caregivers we have encountered along the way have never heard of this disease in this area of the country. It was not until my father saw a gerontologist (sp?) that MSA was even mentioned to us. He has not seen a neurologist since diagnosed. Only his GP has assisted him, and our family thought this terrible disease. So really there has been no support at all. I really think that with the population aging, we need more gerontologist available. Unfortunately, because my Dad has metal fragments in his head, MRI's were not available to us.
This is a hideous disease. I owe my longevity to the practice of Taoist Tai Chi which I do 6 days a week for up to 4 hours a day. Prior to starting the Tai Chi, I was in a wheelchair if I had to walk more than about 30 feet. After 2 years of Health Recovery Tai chi and regular Tai Chi I put away my canes. After 3 years I sold my wheelchairs and scooter. Perhaps I could have saved them as I will need them again at some point, but I was ready to fly on my own before succumbing to having to use them again.
Eleven months after my diagnosis after seeing three different physical therapists, I found an exercise coach who challenged my strength and balance intensely. I also took a gluten cross contamination array 4 test that indicated I was highly sensitive to gluteus, dairy foods. After four months of rigorous work and new eating habits, I started to experience small improvements. The improvements have continued to the present. No more balance issues, brain fog, gained control of my bowel and bladder, strength and stamina greatly improved. I receive comments all the time on how well I look. I plan to continue modifying me exercise and eating habits to hopefully keeping improving.
Please look at b12 please look at fast food eating habits
Please check history of migraine relevancy and possible migraine pattern among MSA patients.
I have read that a history of low cholesterol is correlated with Parkinson’s and presumably other movement disorders. My husband was told to "go have a hamburger" after lab work done in his forties. I just read the cumulative results of this survey and am a bit distressed to see everyone's email addresses. This breaches the confidentiality that was promised. Can you change this?!
My wife, within 3 days of her death, literally went 'round the bend' mentally. She attempted to obtain a divorce, enlisted the assistance of two visiting friends and her son to remove herself from our home, telling them that I wouldn't let her do what she wanted to do with her retirement account, and went back to Ohio from Florida, after having received the medical OK from Hope Hospice in Fort Myers, Florida, to travel by air. In my considered opinion, the trip killed her. She arrived in Ohio and was admitted to a hospice facility at 4:30 in the afternoon and died the following morning at 6:30. For several years prior to her death, we had an appointment on our calendars every Friday, to work on wills and estate planning, and she perpetually put it off. The day she left, we had an appointment to see an estate attorney to resolve all the end of life issues, and she bailed out on it. My cautionary note for all affected is that the cognitive difficulties will become virtually insurmountable at the final stage of the disease. Any and all end of life decisions should be made as far in advance as possible, in writing, with professional assistance, and shared with family members.
EDUCATE PATIENTS.
I told my Neuro psychiatrist I had this all planned out and that my family therapist and all my doctors new this is my plan. She wanted to hospitalize me for a month or so for evaluation because she saw having such a detailed plan a sign that I was suicidal. I lied my way out of the admissions process and left. I fired her.
She has had symptoms for at least 3 years. Most of which was low key stuff, nothing that would cause alarm and all easily explainable. For instance, pain across her shoulders (she has mild arthritis), she suffered night terrors and poor sleep (but drinks too much caffeine and smokes), an itchy head (we thought this was sensitivity to shampoo and kept changing brands), vision problems (we renewed her glasses prescription). Then very quickly over a few months she was displaying a mild slurring of her speech (we thought her heart problems had returned), drop in blood pressure (again, thought this was a return of heart problems), slowing of her gait (she exhibited this just after her heart attack and it took a long time to fix it, we thought its return was due to more heart issues and her age - after the heart attack she developed asthma, not something she had ever had before). We saw the GP and he said her heart was fine, by now she had her a couple of falls (which she had explained away because she has small dogs who are underfoot).
Awareness is the biggest obstacle for the patients. The medical community, social worker community and the general public seems to have confusion with MSA and MS. There seems to be a lot of 'grey' areas to this illness and comments from the medical professions 'let's try this' to make you more comfortable. Why isn't there a definitive protocol for the patients?
It is important to acknowledge, examine and assess the role of toxins and traumas in the development of MSA, because knowing the prior history may affect the treatment plan. IF a doctor does not ask, patients should volunteer the information.
a conscious decision was made by patient to stop nutrition - taking only liquids to wash down meds. Body expired within 3 days at home surrounded by family. Everyone was comfortable with his decision and supported him in it.
I started having urinary issues/ED issues prior to 2007. I was seeing a Urologist and on several medications by 2008. MSA (and CJD) were first discussed with me in 2014.
Please share your findings, especially with the medications. A 3 years PT, stretching and strengthen program helped greatly. It allowed for freedom away from walker and an occasional cane use for quite a few years. Choose wisely which battles to take on and when to take a step back to rest. MSA social media helps everyone dealing with this dreaded disorder.
I'm happy to be contacted regarding any of the above as needed.
It's awful
Person concerned resisted full nursing care in an aged care facility as long as possible until his cats were looked after together. He was a university educated single man who was very independent until almost suddenly struck down by MSA symptoms. He became very cynical with life, depressed and no longer wanted to live.
We have belonged to support groups in 2 cities. An informal survey of participants in the group revealed most members in each group had suffered either head injuries and/or toxic exposures. Physicians don't ask about these types of incidents when taking health histories. One neurologist told me shamefacedly, "Well, we ask about things over which we might have some control." Not helpful.
Regarding the last question above. I believe the patient has the right to refuse certain treatments/procedures which may lead to an earlier death. I have strong feelings that a patient has no right to take action to end one's life at will on own or having someone else assisting them. 2. In my opinion, there is too much self-promotion and ego amongst all 3 areas, resulting in lack of cooperation and slowing the desired outcome. 3. I'd like to see an effort for MSA to become a subset of a larger better funded Parkinson research.
Time Line: Loss of smell occurred when quite young, while in his 20s. REM Sleep Disorder began to occur in his early 30s and became increasingly disruptive to sleep and to partner and precipitated relationship with first neurologist. Soft, flat voice began to develop somewhere in there too. Impotence and bladder control issues not related to prostate began occurring in his 50s. Dreadful accident and severe TBI occurred in his mid-60s with some cognitive deficits and slowing as a result. Regained significant cognitive abilities due to plasticity of brain. First neurologist suggested possibility of Parkinson's 4 years before third neurologist/movement specialist diagnosed him with MSA. Diagnosis was confirmed with tilt-table test.
I have found that my diabetes and pain meds tend to predispose some of the movement disorder specialists to want to ascribe most of the symptoms to diabetes. My nephrologist knew that my extreme hypertension was likely an autonomic issue but didn't know which way to go with the info (at the University of Washington) so wasn't diagnosed. Only the REM sleep disorder and a few other symptoms caused doctors to go if different directions. It was a physical therapist who found the cogwheeling.
We are getting close to the point where we need to make big changes in our home and in our lifestyle. I have no idea where to start on this. I am tech-savvy, but I have no idea how to find resources and information in person or online. I'm not even sure what to Google. I've Googled MSA, etc. but have not found a lot of practical information. I haven't yet asked the neurologist directly about it, but I will. I also wonder about how to finance changes in our home and lifestyle. We also find that few people, even in the medical field, are aware of MSA.
Lost job, Health insurance and Driver’s license in 18 months Have a hard time to start new.
I believe that there needs to be much more done to increase the awareness of this horrific disease. I also believe that there needs to be more training given to medical professionals that this disease even exists. I have found that there are a great many medical professionals that have never heard of this disease. I know that it takes a great deal of money to get the word out and to educate people about this disease. I firmly believe that all of the organizations that are out there that have anything to do with MSA need to consolidate into one large group. The more people there are in a group, the better the response. Having many smaller groups doesn't garner the same attention.
Our family struggled to find resources to help Hal. The inability for him to receive Medicare immediately like ALS patients was very disappointing despite our efforts with local agencies and several members of Congress. Hal wanted to donate his brain, but when it came time to do so, the process was impossible! I am a physician and could not get anyone to help me find someone to harvest his brain. Agencies tried to help me, but I was the one who had to contact someone to do the harvesting and go nowhere until U. Miami got involved. They took care of everything and eventually an agency that had turned me down (Jefferson Parish Coroner’s Office) did the harvest for Miami. The "Prion Paper" had just come out and I was flatly denied by the local coroner in East Baton Rouge Parish because he felt his staff would be at risk for infection. VERY frustrating experience! If agencies want these brains for research, more help needs to be offered for the families to facilitate donation. I started the process well before Hal died, thank goodness, and Miami put all in place before he died.
My symptoms started the next day after a shoulder repair surgery. Before that day I had no symptoms.
What has been frustrating is that it has taken so many years and back-and-forth exchanges between doctors--some of whom thought my husband was faking symptoms and some of whom did not seem to want to give credence to symptoms reported to them by family if they could not see the symptoms themselves. My husband was verging on need of a wheelchair before he had a bad enough day at a doctor's office that it finally got the doctor's attention as a serious concern.
Early Advance Directive Care & Power of Attorney legally drawn up while persons involved are able to make these decisions is a very sensible move. In South Australia very few people have come across MSA & confuse it with MS. Parkinson’s Australia issue an excellent folder & taken everywhere. MSA Australia & New Zealand on computer really helpful.
Need to have access to a neurologist who can see the patient on a regular basis.

Thank you for taking the time to complete this survey - your input is invaluable for those involved in MSA research, education and awareness. We welcome your comments about this survey - please enter them here or via dataMSA@yahoo.com

Excellent Survey
Excellent survey
Please feel free to contact me if you need further information., there is so much more to say than what is here. This is very well done. I was my husband’s caregiver 24/7. Thank you! I pray for a cure for this terrible disease.
I am very interested in what your findings are so any information that you can forward me I appreciate. Thank you, Rickie Robinson,
I am so grateful for this survey I hope anything I have said will help, my grandfather sold fruit and veg for a living and my mother’s house was always full of boxes of fruit I'm just saying this in case there could be a link with pesticides or something, thank you.
I think this needs to be done / and I would be interested in reading the responses. we were given this survey by a friend with msa.
Thank you to Bill for his amazing effort to put this invaluable survey together. I'm sorry it took so long for me to get to it!
Great job Bill and thank you for your initiative!
So glad to see this survey. The questions, the prompts and the format made completing this survey a rewarding experience for both of us.
Glad to see this being done! Should have also added what jobs and /or professions the patient had. Also, if any of the patients had ever lived in a foreign country.
My husband was condemned to suffer in physical and emotional agony. My husband was NOT adequately medicated by Providence Hospice for the subsequent muscle spasms after being segued to Methadone. We begged that the PRN orders for morphine be changed to hourly doses, and our request was denied. MSA patients need to be heavily medicated for pain and given high doses of Diazepam for muscle spasms and anxiety. When they are unable to speak and the family is not present to request additional medication, these orders should be automatic so the foster caregiver can feel comfortable medicating the patient properly. I'm happy to discuss this with someone any time or testify or anything else to advocate for proper MSA patient care.
I want delighted to do this survey, first one I have participated in or even seen, I hope it even gives u a little help in finding a way to make life a little more bearable for people with MSA.
Very informative!! Now help us!!!
yes, you were spot on with the lists of symptoms etc. there could have been questions towards the end about those who are still living with it after many years, they seem to only be about those who have died already. Otherwise a good survey well done.
I believe this survey is invaluable in recording patients and caregivers experiences with MSA. I hope it becomes a book, or at least a serious pamphlet, guiding those who are uneducated and uninformed of the disease, through the manifold difficulties both patients and caregivers must navigate. It's too late for my wife and me, but not for those suffering through similar experiences.
Thank You for your efforts!
Contact me for any future surveys or questions
My biggest issue is not really knowing what is going to happen and when and this leaves me feeling quite frightened. Thank you for all the work that you do.
Thanks, it's scary.
My mum is very early in her diagnosis and she has had mild symptoms for the last few years. If you would like to do a follow up in the intervening months/years, please feel free to get in touch.
One of the few surveys I've seen in recent years that wasn't limited in scope to obtain useless results or questions designed to support a predetermined agenda. Good job!
I feel like someone cares about our experience now. Good luck with this.
Thank you for caring.
thank you for doing this
My husband had been the picture of health his entire life. Never drank, never smoked, worked out 6 days a week. Always had a desk job. Overall good guy. Excellent husband and father of 2. 6 ' 180 or so his entire adulthood. MSA has rocked our world. No explanation at all. Wondering if it is inherited. Aunt passed away from "ALS" and 80-year-old father passed away with MSA symptoms. You are welcome to contact me (us). Thank you. Cee Cee
MSA SUCKS!!!
My brother was healthy, strong and started with balance issues, we thought he was clumsy but then the tremors started and because he refused to use a cane, he fell and broke a hip. Then he started a walker, lost his balance and broke the other hip. The neurologist that was treating him had never seen even a case of Ataxia. She educated herself and was sure it was MSA because the symptoms were so rapid. So, she sent him to Emory to see a doctor that treated only Ataxia and balance problems. He confirmed he was sure it was MSA. Be sure you see doctors that are interested and make sure they are learning about your case.
Thanks, we need this information. Most of my medical team didn't even know what MSA is until I brought it up.
If any other information could be helpful for your study, feel free to contact me from the E-Mail listed on this Survey Form. Thank You for taking this Survey so that others can gain knowledge of MSA/
Please Help. . .! _!
Hope to be of help
Thank you so much for helping to raise awareness, hopefully in the next few years there will be a break through with research and we will be a step closer in finding a cure. I would also be interested to know how many participants in this survey were from Australia? We are yet to meet another person with MSA
This survey will not accept Europe so selected Australia to complete survey.
I am so thankful that these groups are available with support for us with MSA.
I have reviewed our answers
Thank You.
Thank you for the opportunity to participate in this survey.
Further study needs to be undertaken into the long-term effects of exposure to chemicals/solvents and jobs such as welding, with regards to diseases like MSA
This could be a very valuable survey for MSA. Thank you!
Please see the above.
I was more than happy to fill out this survey. I hope to receive some news from it in the future.
Thank you for doing this research into MSA. As a sufferer I really appreciate it :)
I'm so glad you are compiling this information and I hope we are able to receive a copy when completed Thank you!

Thank you for taking the time to complete this data*MSA Survey. Your responses will be shared with other individuals affected by MSA, their caregivers and their families - as well as research and educational centers dedicated to Multiple System Atrophy.

No funds or revenue are in any way generated or collected by data*MSA and all respondents remain confidential. Please know that your willingness to share these experiences is truly appreciated.

END

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dataMSA Survey for Multiple System Atrophy Patient Data Report03/01/2014-03/01/2019Number of Participants: 832

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dataMSA Survey for Multiple System Atrophy Patient Data Report
03/01/2014-03/01/2019
Number of Participants: 832