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
394
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
148
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
97
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
87
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
54
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
29
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
29
Treatment name(s)
Type
Supplement
How many have tried
28
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
24
Tried for
amyotrophic lateral sclerosis (21) anxious mood (7)
3 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 (358 evaluations)
Side effects
fatigue nausea 58 more
Total evaluations
361
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (546 evaluations)
Side effects
constipation abdominal bloating 33 more
Total evaluations
547
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (88 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
93
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (68 evaluations)
Side effects
fatigue breathing difficulty 27 more
Total evaluations
68
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (52 evaluations)
Side effects
balance problems sexual dysfunction 12 more
Total evaluations
59
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (22 evaluations)
Side effects
diarrhea acid reflux 2 more
Total evaluations
23
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
dry mouth difficulty staying asleep 2 more
Total evaluations
16
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (34 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
36
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (16 evaluations)
Side effects
drowsiness
Total evaluations
30
Tried for
amyotrophic lateral sclerosis (21) anxious mood (7)
3 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 4
20s 115
30s 532
40s 1238
50s 2737
60s 3464
70+ 2882
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 1460
50-59 years 1855
60-69 years 1272
70+ years 329

Distribution of sex

Sex
Sex Proportion # of patients
Male 5724
Female 4619

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6577
Not Diagnosed 299

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