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
500
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
159
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
137
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
81
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
66
Tried for
amyotrophic lateral sclerosis (63) excess saliva (3)
1 more
Treatment name(s)
Type
Supplement
How many have tried
41
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
37
Treatment name(s)

(BiPAP machine)
Type
Equipment
How many have tried
35
Treatment name(s)
Type
Supplement
How many have tried
29
Tried for
amyotrophic lateral sclerosis (29) fatigue (1)
1 more
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
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 (485 evaluations)
Side effects
fatigue nausea 70 more
Total evaluations
488
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (562 evaluations)
Side effects
constipation abdominal bloating 34 more
Total evaluations
563
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (106 evaluations)
Side effects
drowsiness dizziness 23 more
Total evaluations
117
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (66 evaluations)
Side effects
fatigue breathing difficulty 23 more
Total evaluations
66
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (62 evaluations)
Side effects
balance problems dry mouth 12 more
Total evaluations
70
Tried for
amyotrophic lateral sclerosis (63) excess saliva (3)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (49 evaluations)
Side effects
diarrhea acidosis 4 more
Total evaluations
51
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (33 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
35
Treatment name(s)

(BiPAP machine)
Perceived effectiveness
for amyotrophic lateral sclerosis (12 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
16
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (25 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
25
Tried for
amyotrophic lateral sclerosis (29) fatigue (1)
1 more
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (10 evaluations)
Side effects
Total evaluations
12
  • 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 5
20s 120
30s 516
40s 1296
50s 2708
60s 3286
70+ 2486
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 233
30-39 years 737
40-49 years 1459
50-59 years 1857
60-69 years 1272
70+ years 327

Distribution of sex

Sex
Sex Proportion # of patients
Male 5419
Female 4362

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6574
Not Diagnosed 299

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