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
585
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
175
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
163
Treatment name(s)
Type
Supplement
How many have tried
67
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
64
Tried for
amyotrophic lateral sclerosis (63) excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
47
Tried for
amyotrophic lateral sclerosis (46) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
37
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
35
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
34
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 (559 evaluations)
Side effects
fatigue nausea 81 more
Total evaluations
565
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (108 evaluations)
Side effects
drowsiness dizziness 25 more
Total evaluations
129
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (613 evaluations)
Side effects
constipation abdominal bloating 37 more
Total evaluations
614
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (84 evaluations)
Side effects
diarrhea acidosis 14 more
Total evaluations
84
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
balance problems dry mouth 9 more
Total evaluations
59
Tried for
amyotrophic lateral sclerosis (63) excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
diarrhea gastrointestinal problems 2 more
Total evaluations
55
Tried for
amyotrophic lateral sclerosis (46) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth dry mouth at night 6 more
Total evaluations
18
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (17 evaluations)
Side effects
dizzy spells
Total evaluations
17
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (28 evaluations)
Side effects
breathing difficulty fatigue 15 more
Total evaluations
28
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 143
30s 473
40s 1,277
50s 2,548
60s 2,918
70+ 1,920
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 227
30-39 years 704
40-49 years 1,406
50-59 years 1,769
60-69 years 1,162
70+ years 287

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,054
Not Diagnosed 302

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