Number of Participants: 832 Responses are unedited.
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
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)
