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
524
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
143
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
78
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
67
Tried for
amyotrophic lateral sclerosis (64) excess saliva (3)
1 more
Treatment name(s)
Type
Supplement
How many have tried
45
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
41
Treatment name(s)

(BiPAP machine)
Type
Equipment
How many have tried
37
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
27
Treatment name(s)
Type
Supplement
How many have tried
26
Tried for
amyotrophic lateral sclerosis (26) fatigue (1)
1 more

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 (513 evaluations)
Side effects
fatigue nausea 77 more
Total evaluations
516
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 (106 evaluations)
Side effects
drowsiness dizziness 23 more
Total evaluations
119
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (64 evaluations)
Side effects
fatigue breathing difficulty 23 more
Total evaluations
64
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (64 evaluations)
Side effects
balance problems dry mouth 13 more
Total evaluations
72
Tried for
amyotrophic lateral sclerosis (64) excess saliva (3)
1 more
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (51 evaluations)
Side effects
diarrhea acidosis 5 more
Total evaluations
53
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (35 evaluations)
Side effects
diarrhea acid reflux 3 more
Total evaluations
37
Treatment name(s)

(BiPAP machine)
Perceived effectiveness
for amyotrophic lateral sclerosis (12 evaluations)
Side effects
dry mouth difficulty staying asleep 4 more
Total evaluations
18
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (12 evaluations)
Side effects
Total evaluations
13
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (22 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
22
Tried for
amyotrophic lateral sclerosis (26) fatigue (1)
1 more
  • 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 127
30s 489
40s 1308
50s 2700
60s 3235
70+ 2353
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 234
30-39 years 735
40-49 years 1456
50-59 years 1853
60-69 years 1263
70+ years 325

Distribution of sex

Sex
Sex Proportion # of patients
Male 5307
Female 4274

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6546
Not Diagnosed 298

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