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, insomnia, fatigue, and pain) 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
605
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
177
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
160
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
47
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
34
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
33
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
30
Tried for
Insomnia (14) Excess saliva (10)
3 more
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
28

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 (560 evaluations)
Side effects
Fatigue Nausea 84 more
Total evaluations
566
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (102 evaluations)
Side effects
Drowsiness Dizziness 27 more
Total evaluations
127
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (597 evaluations)
Side effects
Constipation Abdominal bloating 37 more
Total evaluations
598
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 (53 evaluations)
Side effects
Dry mouth Sexual dysfunction 11 more
Total evaluations
60
Tried for
amyotrophic lateral sclerosis (63) Excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (48 evaluations)
Side effects
Gastrointestinal problems Stomach discomfort 1 more
Total evaluations
50
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
Dry mouth Dry mouth at night 5 more
Total evaluations
16
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (18 evaluations)
Side effects
Total evaluations
18
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (9 evaluations)
Side effects
Dry mouth Constipation 12 more
Total evaluations
26
Tried for
Insomnia (14) Excess saliva (10)
3 more
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for amyotrophic lateral sclerosis (14 evaluations)
Side effects
Hospitalization Diarrhea 4 more
Total evaluations
14
  • 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 6
20s 133
30s 453
40s 1,235
50s 2,452
60s 2,779
70+ 1,774
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 220
30-39 years 685
40-49 years 1,359
50-59 years 1,712
60-69 years 1,121
70+ years 265

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,872
Not Diagnosed 287

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