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
420
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
102
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
84
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
57
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
32
Treatment name(s)
Type
Supplement
How many have tried
31
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
30
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
24
Treatment name(s)
Type
Supplement
How many have tried
24
Tried for
amyotrophic lateral sclerosis (24) 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 (382 evaluations)
Side effects
fatigue nausea 59 more
Total evaluations
385
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 (90 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
96
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (66 evaluations)
Side effects
fatigue breathing difficulty 26 more
Total evaluations
66
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (55 evaluations)
Side effects
balance problems sexual dysfunction 12 more
Total evaluations
63
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
18
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (37 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
39
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (22 evaluations)
Side effects
diarrhea acid reflux 2 more
Total evaluations
23
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (11 evaluations)
Side effects
Total evaluations
13
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (22 evaluations)
Side effects
stomach discomfort chronic diarrhea 4 more
Total evaluations
22
Tried for
amyotrophic lateral sclerosis (24) 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 124
30s 541
40s 1240
50s 2758
60s 3433
70+ 2789
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 1273
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5678
Female 4579

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6577
Not Diagnosed 297

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