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
573
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
170
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
164
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
65
Tried for
amyotrophic lateral sclerosis (63) excess saliva (2)
1 more
Treatment name(s)
Type
Supplement
How many have tried
53
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
46
Tried for
amyotrophic lateral sclerosis (45) constipation (1)
1 more
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
46
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
33
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 (545 evaluations)
Side effects
fatigue nausea 78 more
Total evaluations
549
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (108 evaluations)
Side effects
drowsiness dizziness 24 more
Total evaluations
126
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (615 evaluations)
Side effects
constipation abdominal bloating 37 more
Total evaluations
616
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (54 evaluations)
Side effects
balance problems dry mouth 9 more
Total evaluations
60
Tried for
amyotrophic lateral sclerosis (63) excess saliva (2)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (66 evaluations)
Side effects
diarrhea acidosis 13 more
Total evaluations
66
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (51 evaluations)
Side effects
diarrhea gastrointestinal problems 2 more
Total evaluations
53
Tried for
amyotrophic lateral sclerosis (45) constipation (1)
1 more
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (37 evaluations)
Side effects
breathing difficulty fatigue 18 more
Total evaluations
37
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth difficulty sleeping through night 6 more
Total evaluations
19
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (17 evaluations)
Side effects
dizzy spells
Total evaluations
17
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 470
40s 1,274
50s 2,570
60s 2,920
70+ 1,975
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 227
30-39 years 707
40-49 years 1,409
50-59 years 1,783
60-69 years 1,171
70+ years 292

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,089
Not Diagnosed 303

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