Amyotrophic lateral sclerosis

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

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What is amyotrophic lateral sclerosis?

ALS (amyotrophic lateral sclerosis) is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brainstem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Common symptoms reported by people with amyotrophic lateral sclerosis

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with amyotrophic lateral sclerosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
562
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
163
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
159
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
68
Tried for
amyotrophic lateral sclerosis (65) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
62
Treatment name(s)
Type
Supplement
How many have tried
48
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
44
Tried for
amyotrophic lateral sclerosis (43) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
40
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
31
Treatment name(s)
Type
Supplement
How many have tried
28
Tried for
amyotrophic lateral sclerosis (28) fatigue (1)
1 more

Data from patients with amyotrophic lateral sclerosis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with amyotrophic lateral sclerosis

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Rilutek)
Perceived effectiveness
for amyotrophic lateral sclerosis (543 evaluations)
Side effects
fatigue nausea 77 more
Total evaluations
546
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (616 evaluations)
Side effects
constipation abdominal bloating 36 more
Total evaluations
617
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (111 evaluations)
Side effects
drowsiness dizziness 24 more
Total evaluations
126
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (58 evaluations)
Side effects
balance problems dry mouth 10 more
Total evaluations
66
Tried for
amyotrophic lateral sclerosis (65) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
breathing difficulty fatigue 21 more
Total evaluations
53
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
diarrhea acidosis 8 more
Total evaluations
53
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (55 evaluations)
Side effects
stomach discomfort diarrhea 2 more
Total evaluations
57
Tried for
amyotrophic lateral sclerosis (43) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (18 evaluations)
Side effects
dry mouth difficulty staying asleep 5 more
Total evaluations
22
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
Total evaluations
15
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (23 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
23
Tried for
amyotrophic lateral sclerosis (28) fatigue (1)
1 more
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with amyotrophic lateral sclerosis, who reported starting treatments within the last 5 years.
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Who has amyotrophic lateral sclerosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 6
20s 133
30s 485
40s 1,296
50s 2,609
60s 3,079
70+ 2,137
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 233
30-39 years 721
40-49 years 1,434
50-59 years 1,810
60-69 years 1,217
70+ years 311

Distribution of sex

Sex
Sex Proportion # of patients
Male 5,066
Female 4,049

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,347
Not Diagnosed 290

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