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
553
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
148
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
70
Tried for
amyotrophic lateral sclerosis (67) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
65
Treatment name(s)
Type
Supplement
How many have tried
49
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
42
Tried for
amyotrophic lateral sclerosis (41) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
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
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 (534 evaluations)
Side effects
fatigue nausea 76 more
Total evaluations
537
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 (109 evaluations)
Side effects
drowsiness dizziness 24 more
Total evaluations
121
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (60 evaluations)
Side effects
balance problems dry mouth 11 more
Total evaluations
68
Tried for
amyotrophic lateral sclerosis (67) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (56 evaluations)
Side effects
breathing difficulty fatigue 21 more
Total evaluations
56
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (54 evaluations)
Side effects
diarrhea acidosis 8 more
Total evaluations
56
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (54 evaluations)
Side effects
stomach discomfort acid reflux 3 more
Total evaluations
56
Tried for
amyotrophic lateral sclerosis (41) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (17 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 (14 evaluations)
Side effects
Total evaluations
14
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 4
20s 130
30s 489
40s 1,289
50s 2,598
60s 3,102
70+ 2,176
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 232
30-39 years 723
40-49 years 1,436
50-59 years 1,813
60-69 years 1,224
70+ years 312

Distribution of sex

Sex
Sex Proportion # of patients
Male 5,083
Female 4,078

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,367
Not Diagnosed 290

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