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
602
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
181
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
161
Treatment name(s)
Type
Supplement
How many have tried
71
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
65
Tried for
amyotrophic lateral sclerosis (64) Excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
48
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
35
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
34
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 (565 evaluations)
Side effects
Fatigue Nausea 84 more
Total evaluations
571
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (104 evaluations)
Side effects
Drowsiness Dizziness 27 more
Total evaluations
129
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (601 evaluations)
Side effects
Constipation Abdominal bloating 37 more
Total evaluations
602
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (92 evaluations)
Side effects
Diarrhea Acidosis 15 more
Total evaluations
92
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
Dry mouth Sexual dysfunction 10 more
Total evaluations
60
Tried for
amyotrophic lateral sclerosis (64) Excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (49 evaluations)
Side effects
Gastrointestinal problems Stomach discomfort 1 more
Total evaluations
51
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 458
40s 1,233
50s 2,454
60s 2,790
70+ 1,788
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 223
30-39 years 686
40-49 years 1,361
50-59 years 1,713
60-69 years 1,124
70+ years 266

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,881
Not Diagnosed 289

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