Amyotrophic lateral sclerosis

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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
588
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
71
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
49
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
37
Treatment name(s)

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

(Radicava)
Type
Prescription Drug
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 (556 evaluations)
Side effects
fatigue nausea 80 more
Total evaluations
562
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (108 evaluations)
Side effects
drowsiness dizziness 24 more
Total evaluations
129
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (612 evaluations)
Side effects
constipation abdominal bloating 37 more
Total evaluations
613
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (93 evaluations)
Side effects
diarrhea acidosis 15 more
Total evaluations
93
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (52 evaluations)
Side effects
balance problems dry mouth 9 more
Total evaluations
58
Tried for
amyotrophic lateral sclerosis (63) excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (54 evaluations)
Side effects
diarrhea gastrointestinal problems 2 more
Total evaluations
56
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (20 evaluations)
Side effects
dizzy spells
Total evaluations
20
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)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (26 evaluations)
Side effects
breathing difficulty gait problems 12 more
Total evaluations
26
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (21 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
21
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 140
30s 474
40s 1,277
50s 2,549
60s 2,892
70+ 1,905
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 226
30-39 years 701
40-49 years 1,404
50-59 years 1,763
60-69 years 1,151
70+ years 286

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,034
Not Diagnosed 298

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