Amyotrophic lateral sclerosis

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  • help researchers shorten the path to new treatments tomorrow

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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
432
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
154
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
112
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
83
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
60
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
33
Treatment name(s)
Type
Supplement
How many have tried
33
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
31
Treatment name(s)
Type
Supplement
How many have tried
25
Tried for
amyotrophic lateral sclerosis (25) 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 (394 evaluations)
Side effects
fatigue nausea 56 more
Total evaluations
397
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (555 evaluations)
Side effects
constipation abdominal bloating 33 more
Total evaluations
556
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (94 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
102
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (63 evaluations)
Side effects
fatigue breathing difficulty 23 more
Total evaluations
63
Treatment name(s)

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

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (26 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
27
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (41 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
43
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
16
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (24 evaluations)
Side effects
stomach discomfort chronic diarrhea 5 more
Total evaluations
24
Tried for
amyotrophic lateral sclerosis (25) fatigue (1)
1 more
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (11 evaluations)
Side effects
Total evaluations
13
  • 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 123
30s 530
40s 1258
50s 2740
60s 3387
70+ 2712
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 232
30-39 years 735
40-49 years 1461
50-59 years 1854
60-69 years 1272
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5598
Female 4524

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6575
Not Diagnosed 297

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