Amyotrophic lateral sclerosis

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • 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
567
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
163
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
160
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
67
Tried for
amyotrophic lateral sclerosis (64) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
56
Treatment name(s)
Type
Supplement
How many have tried
50
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
44
Tried for
amyotrophic lateral sclerosis (43) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
41
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
30
Treatment name(s)
Type
Supplement
How many have tried
28
Tried for
amyotrophic lateral sclerosis (28) fatigue (1)
1 more

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 (538 evaluations)
Side effects
fatigue nausea 77 more
Total evaluations
542
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (614 evaluations)
Side effects
constipation abdominal bloating 37 more
Total evaluations
615
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (108 evaluations)
Side effects
drowsiness dizziness 23 more
Total evaluations
124
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (56 evaluations)
Side effects
balance problems dry mouth 10 more
Total evaluations
64
Tried for
amyotrophic lateral sclerosis (64) excess saliva (3)
1 more
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (46 evaluations)
Side effects
breathing difficulty gait problems 20 more
Total evaluations
46
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (58 evaluations)
Side effects
diarrhea acidosis 8 more
Total evaluations
58
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (55 evaluations)
Side effects
stomach discomfort diarrhea 2 more
Total evaluations
57
Tried for
amyotrophic lateral sclerosis (43) constipation (1)
1 more
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (16 evaluations)
Side effects
dry mouth difficulty staying asleep 5 more
Total evaluations
20
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
Total evaluations
13
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (23 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
23
Tried for
amyotrophic lateral sclerosis (28) fatigue (1)
1 more
  • 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 137
30s 486
40s 1,288
50s 2,613
60s 3,038
70+ 2,074
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 230
30-39 years 718
40-49 years 1,427
50-59 years 1,800
60-69 years 1,206
70+ years 300

Distribution of sex

Sex
Sex Proportion # of patients
Male 5,000
Female 4,007

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,286
Not Diagnosed 289

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