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
441
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
119
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
84
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
60
Treatment name(s)
Type
Supplement
How many have tried
35
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
34
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
33
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 (402 evaluations)
Side effects
fatigue nausea 60 more
Total evaluations
405
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 (102 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
111
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 (54 evaluations)
Side effects
balance problems dry mouth 12 more
Total evaluations
62
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (43 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
45
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)

(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 (26 evaluations)
Side effects
stomach discomfort chronic diarrhea 5 more
Total evaluations
26
Tried for
amyotrophic lateral sclerosis (25) 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 122
30s 525
40s 1263
50s 2729
60s 3352
70+ 2690
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 232
30-39 years 736
40-49 years 1461
50-59 years 1853
60-69 years 1270
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5555
Female 4499

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6571
Not Diagnosed 297

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