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
603
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
49
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
36
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
34
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
29
Tried for
Insomnia (13) 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 (570 evaluations)
Side effects
Fatigue Nausea 85 more
Total evaluations
576
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (105 evaluations)
Side effects
Drowsiness Dizziness 27 more
Total evaluations
130
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (610 evaluations)
Side effects
Constipation Abdominal bloating 37 more
Total evaluations
611
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 (54 evaluations)
Side effects
Balance problems Dry mouth 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 (50 evaluations)
Side effects
Gastrointestinal problems Stomach discomfort 1 more
Total evaluations
52
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (14 evaluations)
Side effects
Dry mouth Dry mouth at night 5 more
Total evaluations
17
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (17 evaluations)
Side effects
Total evaluations
17
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (9 evaluations)
Side effects
Dry mouth Constipation 12 more
Total evaluations
26
Tried for
Insomnia (13) Excess saliva (10)
3 more
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for amyotrophic lateral sclerosis (11 evaluations)
Side effects
Hospitalization Diarrhea 3 more
Total evaluations
11
  • 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 136
30s 467
40s 1,242
50s 2,510
60s 2,840
70+ 1,837
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 223
30-39 years 692
40-49 years 1,381
50-59 years 1,740
60-69 years 1,142
70+ years 281

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,965
Not Diagnosed 293

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