Amyotrophic lateral sclerosis

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  • 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
545
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
161
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
148
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
71
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
69
Tried for
amyotrophic lateral sclerosis (66) excess saliva (3)
1 more
Treatment name(s)
Type
Supplement
How many have tried
50
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
41
Treatment name(s)

(BiPAP machine)
Type
Equipment
How many have tried
38
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
29
Treatment name(s)
Type
Supplement
How many have tried
27
Tried for
amyotrophic lateral sclerosis (27) 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 (524 evaluations)
Side effects
fatigue nausea 79 more
Total evaluations
527
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (575 evaluations)
Side effects
constipation abdominal bloating 35 more
Total evaluations
576
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (110 evaluations)
Side effects
drowsiness dizziness 24 more
Total evaluations
122
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (57 evaluations)
Side effects
breathing difficulty fatigue 21 more
Total evaluations
57
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (64 evaluations)
Side effects
balance problems dry mouth 13 more
Total evaluations
72
Tried for
amyotrophic lateral sclerosis (66) excess saliva (3)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (56 evaluations)
Side effects
diarrhea acidosis 8 more
Total evaluations
58
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (35 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
37
Treatment name(s)

(BiPAP machine)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth difficulty staying asleep 5 more
Total evaluations
21
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (14 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 (27) 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 5
20s 130
30s 492
40s 1,312
50s 2,687
60s 3,205
70+ 2,269
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 234
30-39 years 732
40-49 years 1,449
50-59 years 1,848
60-69 years 1,254
70+ years 321

Distribution of sex

Sex
Sex Proportion # of patients
Male 5,251
Female 4,225

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,511
Not Diagnosed 296

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