dataMSA Survey for Multiple System Atrophy was open to Participants for a 5 years period with The purpose of collect information from individuals, caregivers and loved ones affected by MSA.
the following data shared with Researchers and healthcare Professionals worldwide.
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
39
4.7%
Region II: New Jersey, New York, Puerto Rico, Virgin Islands
40
4.8%
Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia
50
6%
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N/S Carolina, Tennessee
106
12.8%
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin
98
11.8%
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas
76
9.2%
Region VII: Iowa, Kansas, Missouri, Nebraska
31
3.7%
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming
14
1.7%
Region IX: Arizona, California, Hawaii, Nevada, Trust Territories
53
6.4%
Region X: Alaska, Idaho, Oregon, Washington
48
5.8%
Region XI: Canada
38
4.6%
Region XII: Central America
2
0.2%
Region XIII: Asia
15
1.8%
Region XIV: Africa
9
1.1%
Region XV: South America
1
0.1%
Region XVI: Antarctica
1
0.1%
Region XVII: Europe
86
10.4%
Region XVIII: Australia (continent), New Zealand
72
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
0
0%
26-30
1
0.1%
31-35
3
0.4%
36-40
11
1.3%
41-45
28
3.4%
46-50
75
9%
51-55
158
19.1%
56-60
179
21.6%
61-65
180
21.7%
66-70
106
12.8%
71-75
63
7.6%
76-80
16
1.9%
80 or older
9
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
98
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?
1
116
14%
2
264
32%
3
244
29.5%
4
122
14.8%
5 or more
77
9.3%
I have not been seen by a neurologist
3
0.4%
Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA?
no
231
28.2%
yes
589
71.8%
At what age did the individual first notice symptoms, later attributed to MSA?
20-25
3
0.4%
26-30
4
0.5%
31-35
9
1.1%
36-40
25
3%
41-45
62
7.5%
46-50
135
16.4%
51-55
174
21.1%
56-60
187
22.7%
61-65
130
15.8%
66-70
65
7.9%
71-75
23
2.8%
76-80
5
0.6%
80 or older
2
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)
53
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)
51
6.2%
Myalgia (muscle pain)
92
11.1%
Tremors in Extremities
149
18%
Impaired Fine Motor Skills
214
25.9%
Head Droops Down or To One Side
38
4.6%
Dry Eyes
58
7%
Teary Eyes
26
3.1%
Impaired Vision
74
8.9%
Eye Fatigue
35
4.2%
Optic Nerve Damage
3
0.4%
Difficulty Swallowing/Choking
34
4.1%
Excessive Coughing
34
4.1%
Dry Mouth
54
6.5%
Overly Moist Mouth
17
2.1%
Difficulty Breathing
43
5.2%
Impaired Speech
169
20.4%
Digestive Disorder (diarrhea, constipation)
131
15.8%
Excessive Gas/Bloating
39
4.7%
Irregularity
53
6.4%
Impaired Bowel Control
61
7.4%
Impaired Bladder Control
246
29.7%
Impotence
203
24.5%
Chronic Fatigue
129
15.6%
Insomnia
66
8%
Impaired REM Sleep Cycle
165
20%
Confused Thought/Cognition
77
9.3%
Impaired Memory – Short, Intermediate, Long Term
77
9.3%
Inappropriate Emotions (crying, anger, etc)
75
9.1%
Excessive Reaction to Minor Stressors
57
6.9%
Chronic Headaches
63
7.6%
Depression
110
13.3%
Anxiety
96
11.6%
Suicidal Ideation/Thoughts
24
2.9%
Attempt(s) at Suicide
6
0.7%
Chills/Sweating/Overheating
94
11.4%
Rashes, Dry Skin, Itchiness
42
5.1%
Puffiness Under the Skin
13
1.6%
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
38
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
74
9%
Attempt(s) at Suicide
9
1.1%
Chills/Sweating/Overheating
321
39.2%
Rashes, Dry Skin, Itchiness
260
31.8%
Puffiness Under the Skin
89
10.9%
Please indicate events which cause/caused the individual’s MSA symptoms to worsen?
None
82
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%
Are/Were any cycles observed with regard to periods of worsening of the individual’s symptoms?
no
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
76
23.8%
approximately once a week
67
21%
approximately twice a month
47
14.7%
approximately once a month
66
20.7%
less frequently than once a month
63
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
44
14.3%
6-12 hours
38
12.4%
13-18 hours
8
2.6%
19-24 hours
15
4.9%
one to two days
81
26.4%
more than two full days
121
39.4%
Are/Were there any strategies/interventions that help(ed) reduce the individual’s symptoms?
no
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
27
6.4%
Light Therapy
14
3.3%
Speech Therapy
172
41%
Supplements (please describe below)
71
16.9%
Socialization
129
30.7%
Games, Puzzles, etc.
75
17.9%
Neurological Care:
On average, what is/was the frequency of the individual’s neurological care?
less than once a year
61
7.5%
once a year
69
8.5%
twice a year
236
29%
three or more times a year
391
48%
no neurological care since diagnosis
57
7%
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
99
12.7%
Has/Had the individual participated in clinical research regarding MSA?
no
717
88.5%
yes
93
11.5%
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
35
4.5%
Prior multiple traumatic brain injuries
14
1.8%
Prior single head trauma resulting in concussion
68
8.7%
Prior multiple head traumas resulting in concussion
72
9.2%
Prior history of chronic headaches
109
14%
Prior neck injury
77
9.9%
Prior multiple neck injuries
34
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
41
5.2%
Prior diagnosis of Seizure Disorder
18
2.3%
Family history of Alzheimer’s Disease
80
10.2%
Family history of Parkinson’s Disease
77
9.9%
Family history of Multiple Sclerosis
19
2.4%
None of the above
240
30.7%
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
21
2.6%
(2) some subtle signs of progression in the past/last year
67
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%
Living Conditions:
Does/Did the individual receive adequate support to live comfortably?
yes
695
89.7%
no
80
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
29
18.6%
caregiver is/was unable to meet the individual’s needs
34
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
57
36.5%
individual lives/lived at a great distance from medical care/support
24
15.4%
individual refuses/refused assistance
5
3.2%
Other
44
28.2%
Transition Issues:
If the individual was lost to MSA, how long after MSA diagnosis did he/she live?
one year
5
3.8%
two years
13
9.8%
three years
33
24.8%
four years
17
12.8%
five years
14
10.5%
six years
2
1.5%
seven years
5
3.8%
eight years
5
3.8%
nine years
7
5.3%
ten years
7
5.3%
Other
25
18.8%
If the individual was lost to MSA, please indicate the cause of death:
Respiratory failure (stopped breathing)
38
30.9%
Respiratory infection (e.g.: pneumonia)
33
26.8%
Respiratory blockage (choking, obstruction)
7
5.7%
Heart attack
1
0.8%
Stroke
2
1.6%
Other complications from blood clot(s)
2
1.6%
Digestive system failure (unable to digest food)
2
1.6%
Digestive system blockage
14
11.4%
Head injury due to fall
0
0%
Other injury due to fall
0
0%
If the individual was lost to MSA, what was his/her age at the time of death?
20-25
0
0%
26-30
0
0%
31-35
3
2.3%
36-40
1
0.8%
41-45
0
0%
46-50
4
3.1%
51-55
7
5.3%
56-60
19
14.5%
61-65
36
27.5%
66-70
30
22.9%
71-75
22
16.8%
76-80
6
4.6%
81-85
1
0.8%
86-90
1
0.8%
90 or older
1
0.8%
Has/Had the individual made arrangements to donate his/her brain to an agency for research?
No
525
80.3%
Yes
129
19.7%
Does/Did the individual with MSA support a “patient’s right to die?”
