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
426
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
153
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
105
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
83
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
56
Treatment name(s)
Type
Supplement
How many have tried
32
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
31
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
31
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
24
Treatment name(s)

(Robinul)
Type
Prescription Drug
How many have tried
24

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 (383 evaluations)
Side effects
fatigue nausea 57 more
Total evaluations
386
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (552 evaluations)
Side effects
constipation abdominal bloating 33 more
Total evaluations
553
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (93 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
99
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (64 evaluations)
Side effects
fatigue breathing difficulty 23 more
Total evaluations
64
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (54 evaluations)
Side effects
balance problems sexual dysfunction 12 more
Total evaluations
62
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (39 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
41
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (24 evaluations)
Side effects
diarrhea acid reflux 2 more
Total evaluations
25
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (14 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
17
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (11 evaluations)
Side effects
Total evaluations
13
Treatment name(s)

(Robinul)
Perceived effectiveness
for excess saliva (24 evaluations)
Side effects
dry eyes diarrhea 3 more
Total evaluations
25
  • 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 124
30s 537
40s 1251
50s 2753
60s 3412
70+ 2752
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 233
30-39 years 736
40-49 years 1460
50-59 years 1854
60-69 years 1272
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5644
Female 4558

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6576
Not Diagnosed 297

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