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
575
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
184
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
153
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
69
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
65
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
38
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
30
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
29
Tried for
Insomnia (14) Excess saliva (9)
3 more
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
29

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) (516 evaluations)
Side effects
Fatigue Nausea 83 more
How many evaluations
521
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (92 evaluations)
Side effects
Drowsiness Fatigue 29 more
How many evaluations
120
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (538 evaluations)
Side effects
Constipation Abdominal bloating 36 more
How many evaluations
538
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (90 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
90
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (52 evaluations)
Side effects
Dry mouth Balance problems 11 more
How many evaluations
57
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (45 evaluations)
Side effects
Diarrhea Gastrointestinal problems 2 more
How many evaluations
47
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (15 evaluations)
Side effects
Dry mouth Dry mouth at night 7 more
How many evaluations
18
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (13 evaluations)
Side effects
Hospitalization Diarrhea 4 more
How many evaluations
13
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (8 evaluations)
Side effects
Constipation Dry mouth 10 more
How many evaluations
22
Tried for
Insomnia (14) Excess saliva (9)
3 more
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (15 evaluations)
Side effects
How many evaluations
15

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 127
30s 438
40s 1,185
50s 2,330
60s 2,624
70+ 1,583

Sex

Distribution of sex

44% Female
56% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 39
20-29 years 217
30-39 years 673
40-49 years 1,329
50-59 years 1,669
60-69 years 1,084
70+ years 248

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,733
Not Diagnosed 282

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