MSA (Multiple System Atrophy) Community

What is it like to have MSA?

Common symptoms	How bad it is	What people are taking for it
Severity Severe Moderate Mild None
Stiffness/Spasticity	81 (28%) patients experienced severe severity 129 (45%) patients experienced moderate severity 58 (20%) patients experienced mild severity 21 (7%) patients experienced no severity	Carbidopa-Levodopa, Baclofen, Cyclobenzaprine
Anxious mood	29 (10%) patients experienced severe severity 89 (31%) patients experienced moderate severity 99 (34%) patients experienced mild severity 73 (25%) patients experienced no severity	Clonazepam, Alprazolam, Sertraline
Memory problems	21 (7%) patients experienced severe severity 79 (28%) patients experienced moderate severity 110 (39%) patients experienced mild severity 71 (25%) patients experienced no severity	Donepezil, Methylphenidate, Memantine
Cold hands and feet	42 (16%) patients experienced severe severity 93 (35%) patients experienced moderate severity 75 (28%) patients experienced mild severity 59 (22%) patients experienced no severity	Occupational therapy
Sexual dysfunction	114 (40%) patients experienced severe severity 53 (19%) patients experienced moderate severity 49 (17%) patients experienced mild severity 68 (24%) patients experienced no severity	Nothing reported yet
Dizziness with hypotension upon standing	55 (20%) patients experienced severe severity 71 (26%) patients experienced moderate severity 94 (35%) patients experienced mild severity 52 (19%) patients experienced no severity	Fludrocortisone, Meclizine Prescription
Difficulty getting comfortable in bed	57 (21%) patients experienced severe severity 87 (32%) patients experienced moderate severity 79 (29%) patients experienced mild severity 48 (18%) patients experienced no severity	Gabapentin, Zopiclone, Carisoprodol
Bladder problems	92 (33%) patients experienced severe severity 94 (34%) patients experienced moderate severity 55 (20%) patients experienced mild severity 39 (14%) patients experienced no severity	Solifenacin, Oxybutynin, Sanctura XR
Pain	66 (23%) patients experienced severe severity 80 (28%) patients experienced moderate severity 75 (26%) patients experienced mild severity 69 (24%) patients experienced no severity	Ibuprofen, Tramadol, Hydrocodone-Acetaminophen
Insomnia	31 (11%) patients experienced severe severity 77 (26%) patients experienced moderate severity 86 (30%) patients experienced mild severity 97 (33%) patients experienced no severity	Temazepam, Amitriptyline, Mirtazapine
Difficulty breathing at night	20 (7%) patients experienced severe severity 67 (25%) patients experienced moderate severity 82 (30%) patients experienced mild severity 101 (37%) patients experienced no severity	CPAP w/humidifier, Asthmanex, Prednisone
Fatigue	82 (28%) patients experienced severe severity 120 (41%) patients experienced moderate severity 77 (26%) patients experienced mild severity 17 (6%) patients experienced no severity	Modafinil, Amantadine, Rest
Dry mouth (xerostomia)	29 (11%) patients experienced severe severity 64 (24%) patients experienced moderate severity 95 (35%) patients experienced mild severity 81 (30%) patients experienced no severity	Medactive Oral
Ataxia (lack of coordination)	84 (31%) patients experienced severe severity 107 (39%) patients experienced moderate severity 66 (24%) patients experienced mild severity 17 (6%) patients experienced no severity	Vitamin E
Slowness	83 (29%) patients experienced severe severity 126 (44%) patients experienced moderate severity 58 (20%) patients experienced mild severity 17 (6%) patients experienced no severity	Carbidopa-Levodopa
Balance problems	129 (46%) patients experienced severe severity 97 (34%) patients experienced moderate severity 48 (17%) patients experienced mild severity 9 (3%) patients experienced no severity	Physical Therapy (PT), Walking Stick/Cane, Walker
Dry skin	23 (8%) patients experienced severe severity 80 (29%) patients experienced moderate severity 99 (36%) patients experienced mild severity 70 (26%) patients experienced no severity	Nothing reported yet
Constipation	51 (18%) patients experienced severe severity 107 (38%) patients experienced moderate severity 69 (24%) patients experienced mild severity 56 (20%) patients experienced no severity	Senna, Lactulose, Polyethylene Glycol 3350
Excessive daytime sleepiness (somnolence)	43 (15%) patients experienced severe severity 81 (29%) patients experienced moderate severity 96 (34%) patients experienced mild severity 64 (23%) patients experienced no severity	Armodafinil, Amantadine
Apathy	19 (7%) patients experienced severe severity 69 (26%) patients experienced moderate severity 88 (33%) patients experienced mild severity 90 (34%) patients experienced no severity	Sertraline
Depressed mood	35 (12%) patients experienced severe severity 89 (30%) patients experienced moderate severity 105 (36%) patients experienced mild severity 63 (22%) patients experienced no severity	Duloxetine, Escitalopram, Citalopram
Problems concentrating	21 (8%) patients experienced severe severity 100 (37%) patients experienced moderate severity 103 (38%) patients experienced mild severity 48 (18%) patients experienced no severity	Mental Exercise, Memantine
Emotional lability	27 (10%) patients experienced severe severity 79 (29%) patients experienced moderate severity 87 (32%) patients experienced mild severity 79 (29%) patients experienced no severity	Desvenlafaxine, Meditation

What do patients take to treat MSA and its symptoms?

Treatments reported by members	Perceived effectiveness	Overall rating of side effects	# of Evaluations
Carbidopa-Levodopa (Sinemet 25/100, Sinemet 25/250, Caramet CR, Carbidopa-Levodopa 25-100)	2 (15%) experienced major perceived effectiveness 1 (8%) experienced moderate perceived effectiveness 2 (15%) experienced slight perceived effectiveness 6 (46%) experienced no perceived effectiveness 2 (15%) could not tell	2 (15%) experienced severe side effects 4 (31%) experienced moderate side effects 2 (15%) experienced mild side effects 5 (38%) experienced no side effects	13
Levodopa-Benserazide (Madopar HBS, Prolopa, Madopar Depot, Madopar dispersible)	0 (0%) experienced major perceived effectiveness 1 (33%) experienced moderate perceived effectiveness 1 (33%) experienced slight perceived effectiveness 0 (0%) experienced no perceived effectiveness 1 (33%) could not tell	0 (0%) experienced severe side effects 2 (67%) experienced moderate side effects 0 (0%) experienced mild side effects 1 (33%) experienced no side effects	3
Rasagiline (Agilect, Azilect)	0 (0%) experienced major perceived effectiveness 0 (0%) experienced moderate perceived effectiveness 0 (0%) experienced slight perceived effectiveness 1 (50%) experienced no perceived effectiveness 1 (50%) could not tell	0 (0%) experienced severe side effects 0 (0%) experienced moderate side effects 2 (100%) experienced mild side effects 0 (0%) experienced no side effects	2

These charts show data from MSA patients' latest treatment evaluations

Who has MSA at PatientsLikeMe?

647 patients have this condition
11 New patients joined this month
615 say MSA is their primary condition

<20	20s	30s	40s	50s	60s	70+
Current Age
0 patients	17 patients	21 patients	58 patients	125 patients	133 patients	65 patients

Distribution of females vs. males
Gender
53%	Females
47%	Males

Age at first symptom
Age at first symptom	# of patients	Proportion
0-19 years	9	9
20-29 years	14	14
30-39 years	24	24
40-49 years	71	71
50-59 years	120	120
60-69 years	58	58
70+ years	8	8

Types
Condition Types	# of patients	Proportion
Multiple System Atrophy (MSA)	210	210
Olivopontocerebellar atrophy (OPCA/MSA-c)	69	69
Shy-Drager Syndrome (MSA-a)	42	42
Striatonigral degeneration (MSA-p)	52	52

Diagnosis status
Diagnosis status	# of patients	Proportion
Not Diagnosed	44	44
Diagnosed	307	307

These charts show data from MSA patients who have completed their condition history

Most Recent Topics
What do we have in common?	3 days ago
Hi! Introduce yourself here	about 3 weeks ago
MSA Radio Rebroadcast - March 15	about 3 months ago