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
496
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
159
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
138
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
82
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
66
Tried for
amyotrophic lateral sclerosis (63) excess saliva (3)
1 more
Treatment name(s)
Type
Supplement
How many have tried
41
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
37
Treatment name(s)

(BiPAP machine)
Type
Equipment
How many have tried
35
Treatment name(s)
Type
Supplement
How many have tried
30
Tried for
amyotrophic lateral sclerosis (30) 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 (468 evaluations)
Side effects
fatigue nausea 69 more
Total evaluations
471
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (562 evaluations)
Side effects
constipation abdominal bloating 34 more
Total evaluations
563
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (107 evaluations)
Side effects
drowsiness dizziness 23 more
Total evaluations
119
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 (62 evaluations)
Side effects
balance problems dry mouth 12 more
Total evaluations
70
Tried for
amyotrophic lateral sclerosis (63) excess saliva (3)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (49 evaluations)
Side effects
diarrhea acidosis 4 more
Total evaluations
51
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (33 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
35
Treatment name(s)

(BiPAP machine)
Perceived effectiveness
for amyotrophic lateral sclerosis (12 evaluations)
Side effects
dry mouth difficulty staying asleep 3 more
Total evaluations
15
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (26 evaluations)
Side effects
stomach discomfort chronic diarrhea 3 more
Total evaluations
26
Tried for
amyotrophic lateral sclerosis (30) 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 122
30s 519
40s 1294
50s 2705
60s 3302
70+ 2522
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 233
30-39 years 737
40-49 years 1460
50-59 years 1856
60-69 years 1273
70+ years 328

Distribution of sex

Sex
Sex Proportion # of patients
Male 5448
Female 4386

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6577
Not Diagnosed 299

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