ALS (Amyotrophic Lateral Sclerosis)

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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.

What is it like to have 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:

What do patients take to treat ALS (Amyotrophic Lateral Sclerosis) and its symptoms?

You’ve tried
Treatment name(s)
Type
How many have tried
How many evaluations
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
535
How many evaluations
254
Treatment name(s)

(DOM-Baclofen, Gabalon, Kemstro) 5 more
Type
Prescription Drug
How many have tried
193
How many evaluations
56
Treatment name(s)

(Adaptive Servo Ventilator, BiPAP, BiPAP AVAPS) 11 more
Type
Equipment
How many have tried
69
How many evaluations
29
Treatment name(s)

(Bio Organics CoQ10 Capules, CoQ10 Liquid, CoQ10 Plus) 20 more
Type
Supplement
How many have tried
56
How many evaluations
26
Treatment name(s)

(07-AVR-123 OLE, Neurodex, Nuedexta) 1 more
Type
Prescription Drug
How many have tried
50
How many evaluations
28
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Type
Prescription Drug
How many have tried
49
How many evaluations
31
Treatment name(s)

(NOW Coconut oil, Nature's Answer Extra Virgin Coconut Oil, Nutiva Organic Extra Virgin Coconut Oil) 1 more
Type
Supplement
How many have tried
46
How many evaluations
31
Treatment name(s)

(AC Grace Unique E, Boots Vitamin E, Carlson Vitamin E) 28 more
Type
Supplement
How many have tried
43
How many evaluations
20
Treatment name(s)

(Ballard 30 French, Bard Feeding Tube, Corflo Merck 16FR) 5 more
Type
Equipment
How many have tried
42
How many evaluations
13
Type
Other
How many have tried
39
How many evaluations
104
See all 529 treatments
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 for ALS (Amyotrophic Lateral Sclerosis)

You’ve tried
Treatment name(s)
How many have tried
Perceived effectiveness
Side effects
How many evaluations
Treatment name(s)

(Rilutek)
How many have tried
535
Perceived effectiveness
Side effects
Fatigue Elevated liver enzymes 56 more
How many evaluations
254
Treatment name(s)

(DOM-Baclofen, Gabalon, Kemstro) 5 more
How many have tried
193
Perceived effectiveness
Side effects
Drowsiness Fatigue 23 more
How many evaluations
56
Treatment name(s)

(Adaptive Servo Ventilator, BiPAP, BiPAP AVAPS) 11 more
How many have tried
69
Perceived effectiveness
Side effects
Dry mouth at night Abdominal bloating 16 more
How many evaluations
29
Treatment name(s)

(Bio Organics CoQ10 Capules, CoQ10 Liquid, CoQ10 Plus) 20 more
How many have tried
56
Perceived effectiveness
Side effects
How many evaluations
26
Treatment name(s)

(07-AVR-123 OLE, Neurodex, Nuedexta) 1 more
How many have tried
50
Perceived effectiveness
Side effects
Constipation Diarrhea 7 more
How many evaluations
28
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
How many have tried
49
Perceived effectiveness
Side effects
Constipation Daytime sleepiness 6 more
How many evaluations
31
Treatment name(s)

(NOW Coconut oil, Nature's Answer Extra Virgin Coconut Oil, Nutiva Organic Extra Virgin Coconut Oil) 1 more
How many have tried
46
Perceived effectiveness
Side effects
Diarrhea Stomach upset 4 more
How many evaluations
31
Treatment name(s)

(AC Grace Unique E, Boots Vitamin E, Carlson Vitamin E) 28 more
How many have tried
43
Perceived effectiveness
Side effects
How many evaluations
20
Treatment name(s)

(Ballard 30 French, Bard Feeding Tube, Corflo Merck 16FR) 5 more
How many have tried
42
Perceived effectiveness
Side effects
Hospitalization Pain 1 more
How many evaluations
13
How many have tried
39
Perceived effectiveness
Side effects
Heartburn Insomnia 16 more
How many evaluations
104
See all 529 treatments
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 9
20s 108
30s 292
40s 900
50s 1,580
60s 1,648
70+ 949

Gender

Distribution of females vs. males

43% Females
57% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 36
20-29 years 190
30-39 years 572
40-49 years 1,089
50-59 years 1,293
60-69 years 803
70+ years 187

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,528
Not Diagnosed 220

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