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, insomnia, fatigue, and pain) 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
593
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
181
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
161
Treatment name(s)
Type
Supplement
How many have tried
71
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
66
Tried for
amyotrophic lateral sclerosis (65) excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
49
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
37
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
36
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
28
Treatment name(s)
Type
Supplement
How many have tried
28
Tried for
amyotrophic lateral sclerosis (28) 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 (561 evaluations)
Side effects
fatigue nausea 80 more
Total evaluations
567
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for stiffness/spasticity (107 evaluations)
Side effects
drowsiness dizziness 28 more
Total evaluations
132
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (611 evaluations)
Side effects
constipation abdominal bloating 37 more
Total evaluations
612
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (93 evaluations)
Side effects
diarrhea acidosis 15 more
Total evaluations
93
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (53 evaluations)
Side effects
balance problems dry mouth 10 more
Total evaluations
59
Tried for
amyotrophic lateral sclerosis (65) excess saliva (1)
1 more
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (52 evaluations)
Side effects
gastrointestinal problems stomach discomfort 1 more
Total evaluations
54
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (15 evaluations)
Side effects
dry mouth dry mouth at night 6 more
Total evaluations
18
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (19 evaluations)
Side effects
Total evaluations
19
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for amyotrophic lateral sclerosis (11 evaluations)
Side effects
Hospitalization diarrhea 3 more
Total evaluations
11
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (21 evaluations)
Side effects
chronic diarrhea constipation 3 more
Total evaluations
21
Tried for
amyotrophic lateral sclerosis (28) 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 4
20s 139
30s 465
40s 1,250
50s 2,529
60s 2,859
70+ 1,870
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 224
30-39 years 695
40-49 years 1,389
50-59 years 1,750
60-69 years 1,144
70+ years 285

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,990
Not Diagnosed 296

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