Amyotrophic lateral sclerosis

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  • 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
412
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
151
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
101
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
85
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
55
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
31
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
30
Treatment name(s)
Type
Supplement
How many have tried
29
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 (371 evaluations)
Side effects
fatigue nausea 58 more
Total evaluations
374
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (548 evaluations)
Side effects
constipation abdominal bloating 33 more
Total evaluations
549
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (90 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
95
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (67 evaluations)
Side effects
fatigue breathing difficulty 27 more
Total evaluations
67
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (51 evaluations)
Side effects
balance problems sexual dysfunction 12 more
Total evaluations
58
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
18
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)
Perceived effectiveness
for amyotrophic lateral sclerosis (35 evaluations)
Side effects
diarrhea acidosis 2 more
Total evaluations
37
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 117
30s 548
40s 1234
50s 2750
60s 3456
70+ 2833
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 1459
50-59 years 1854
60-69 years 1274
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5705
Female 4605

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6576
Not Diagnosed 297

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