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 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.
Last updated:

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
457
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
155
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
123
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
83
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
61
Tried for
amyotrophic lateral sclerosis (58) excess saliva (3)
1 more
Treatment name(s)
Type
Supplement
How many have tried
39
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
34
Treatment name(s)

(BiPAP machine)
Type
Equipment
How many have tried
33
Treatment name(s)
Type
Supplement
How many have tried
27
Tried for
amyotrophic lateral sclerosis (27) fatigue (1)
1 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.
Last updated:

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 (417 evaluations)
Side effects
fatigue nausea 63 more
Total evaluations
420
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (556 evaluations)
Side effects
constipation abdominal bloating 34 more
Total evaluations
557
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (103 evaluations)
Side effects
drowsiness dizziness 20 more
Total evaluations
112
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (66 evaluations)
Side effects
fatigue breathing difficulty 23 more
Total evaluations
66
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
balance problems dry mouth 12 more
Total evaluations
61
Tried for
amyotrophic lateral sclerosis (58) excess saliva (3)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (46 evaluations)
Side effects
diarrhea acidosis 3 more
Total evaluations
48
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (25 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
27
Treatment name(s)

(BiPAP machine)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
16
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (26 evaluations)
Side effects
stomach discomfort chronic diarrhea 5 more
Total evaluations
26
Tried for
amyotrophic lateral sclerosis (27) fatigue (1)
1 more
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (10 evaluations)
Side effects
Total evaluations
12
  • 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.
Last updated:

Who has amyotrophic lateral sclerosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 5
20s 117
30s 521
40s 1268
50s 2717
60s 3309
70+ 2622
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 232
30-39 years 737
40-49 years 1460
50-59 years 1852
60-69 years 1269
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5495
Female 4428

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6567
Not Diagnosed 297

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