ALS (Amyotrophic Lateral Sclerosis)

We’re all in this for good.

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

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
496
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Type
Prescription Drug
How many have tried
195
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
67
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
52
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
47
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
46
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
43
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
43
Check to add this treatment to your profile
Type
Other
How many have tried
39
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
38
Tried for
Insomnia (14) Excess saliva (13)
4 more

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) (256 evaluations)
Side effects
Fatigue Elevated liver enzymes 63 more
How many evaluations
259
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (44 evaluations)
Side effects
Drowsiness Dizziness 22 more
How many evaluations
57
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (26 evaluations)
Side effects
Dry mouth at night Abdominal bloating 16 more
How many evaluations
31
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for Emotional lability (23 evaluations)
Side effects
Constipation Diarrhea 7 more
How many evaluations
30
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (28 evaluations)
Side effects
Diarrhea Stomach upset 4 more
How many evaluations
33
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (18 evaluations)
Side effects
How many evaluations
20
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (58 evaluations)
Side effects
Diarrhea Charlie horses in calves 13 more
How many evaluations
58
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 Pain 1 more
How many evaluations
14
Check to add this treatment to your profile
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (103 evaluations)
Side effects
Heartburn Insomnia 16 more
How many evaluations
104
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (8 evaluations)
Side effects
Constipation Dry mouth at night 5 more
How many evaluations
27
Tried for
Insomnia (14) Excess saliva (13)
4 more

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 8
20s 107
30s 306
40s 906
50s 1,658
60s 1,802
70+ 1,041

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 194
30-39 years 583
40-49 years 1,127
50-59 years 1,341
60-69 years 830
70+ years 195

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,678
Not Diagnosed 238

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