ALS (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

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is ALS (Amyotrophic Lateral Sclerosis)?

ALS (amyotrophic lateral sclerosis) is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Common symptoms reported by people with ALS (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, insomnia, fatigue, and pain) regardless of condition.
Last updated:

Treatments taken by people with ALS (Amyotrophic Lateral Sclerosis)

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
436
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Type
Prescription Drug
How many have tried
167
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
62
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
59
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
57
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
53
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
50
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
36
Check to add this treatment to your profile
Type
Other
How many have tried
35
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
32

Data from patients with ALS (Amyotrophic Lateral Sclerosis), who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments taken by people with ALS (Amyotrophic Lateral Sclerosis)

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Rilutek)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (271 evaluations)
Side effects
Fatigue Elevated liver enzymes 56 more
How many evaluations
274
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (30 evaluations)
Side effects
Drowsiness Excessive daytime sleepiness (somnolence) 20 more
How many evaluations
64
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (29 evaluations)
Side effects
Bladder problems Constipation 12 more
How many evaluations
48
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (98 evaluations)
Side effects
Constipation Occasional constipation 9 more
How many evaluations
98
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (68 evaluations)
Side effects
Diarrhea Charlie horses in calves 13 more
How many evaluations
68
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (31 evaluations)
Side effects
Diarrhea Gastrointestinal problems 2 more
How many evaluations
32
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (20 evaluations)
Side effects
Dry mouth Abdominal bloating 13 more
How many evaluations
23
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (14 evaluations)
Side effects
How many evaluations
14
Check to add this treatment to your profile
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (96 evaluations)
Side effects
Heartburn Insomnia 16 more
How many evaluations
97
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (11 evaluations)
Side effects
Hospitalization Diarrhea 2 more
How many evaluations
13

Data from patients with ALS (Amyotrophic Lateral Sclerosis), who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has ALS (Amyotrophic Lateral Sclerosis) on PatientsLikeMe?


Age
Age Proportion # of patients
<20 7
20s 115
30s 353
40s 977
50s 1,877
60s 2,094
70+ 1,189

Sex

Distribution of sex

43% Female
57% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 36
20-29 years 208
30-39 years 621
40-49 years 1,206
50-59 years 1,466
60-69 years 931
70+ years 208

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,090
Not Diagnosed 253

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