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
524
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
181
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
133
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
88
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
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
61
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
46
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
32
Tried for
Insomnia (15) Excess saliva (9)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Type
Equipment
How many have tried
31
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
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) (438 evaluations)
Side effects
Fatigue Nausea 78 more
How many evaluations
443
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (80 evaluations)
Side effects
Drowsiness Fatigue 29 more
How many evaluations
109
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (421 evaluations)
Side effects
Constipation Flatulence 31 more
How many evaluations
421
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (47 evaluations)
Side effects
Balance worsened Bladder problems 12 more
How many evaluations
86
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (84 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
84
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (43 evaluations)
Side effects
Diarrhea Gastrointestinal problems 4 more
How many evaluations
45
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (17 evaluations)
Side effects
Dry mouth Biting inner cheek 6 more
How many evaluations
20
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (10 evaluations)
Side effects
Dry mouth Constipation 10 more
How many evaluations
31
Tried for
Insomnia (15) Excess saliva (9)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (32 evaluations)
Side effects
Hospitalization Breathing difficulty 6 more
How many evaluations
32
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 3 more
How many evaluations
14

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 6
20s 128
30s 389
40s 1,114
50s 2,223
60s 2,493
70+ 1,450

Sex

Distribution of sex

44% Female
56% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 37
20-29 years 212
30-39 years 650
40-49 years 1,298
50-59 years 1,611
60-69 years 1,044
70+ years 236

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,561
Not Diagnosed 275

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