ALS (Amyotrophic Lateral Sclerosis)

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  • 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
Tried for
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
525
Treatment name(s)

(DOM-Baclofen, Gabalon, Kemstro) 5 more
Type
Prescription Drug
How many have tried
197
Treatment name(s)

(Adaptive Servo Ventilator, BiPAP, BiPAP AVAPS) 11 more
Type
Equipment
How many have tried
67
Treatment name(s)

(Bio Organics CoQ10 Capules, CoQ10 Liquid, CoQ10 Plus) 20 more
Type
Supplement
How many have tried
52
Treatment name(s)

(07-AVR-123 OLE, Neurodex, Nuedexta) 1 more
Type
Prescription Drug
How many have tried
49
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
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Type
Prescription Drug
How many have tried
45
Tried for
Excess saliva (19) Insomnia (15)
4 more
Treatment name(s)

(Ballard 30 French, Bard Feeding Tube, Corflo Merck 16FR) 5 more
Type
Equipment
How many have tried
42
Treatment name(s)

(AC Grace Unique E, Boots Vitamin E, Carlson Vitamin E) 28 more
Type
Supplement
How many have tried
42
Type
Other
How many have tried
39

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)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Treatment name(s)

(Rilutek)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (248 evaluations)
Side effects
Fatigue Elevated liver enzymes 56 more
How many evaluations
251
Treatment name(s)

(DOM-Baclofen, Gabalon, Kemstro) 5 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (44 evaluations)
Side effects
Drowsiness Fatigue 23 more
How many evaluations
56
Treatment name(s)

(Adaptive Servo Ventilator, BiPAP, BiPAP AVAPS) 11 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (26 evaluations)
Side effects
Dry mouth at night Abdominal bloating 16 more
How many evaluations
30
Treatment name(s)

(Bio Organics CoQ10 Capules, CoQ10 Liquid, CoQ10 Plus) 20 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (22 evaluations)
Side effects
How many evaluations
23
Treatment name(s)

(07-AVR-123 OLE, Neurodex, Nuedexta) 1 more
Perceived effectiveness
for Emotional lability (21 evaluations)
Side effects
Constipation Diarrhea 7 more
How many evaluations
28
Treatment name(s)

(NOW Coconut oil, Nature's Answer Extra Virgin Coconut Oil, Nutiva Organic Extra Virgin Coconut Oil) 1 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (26 evaluations)
Side effects
Diarrhea Stomach upset 4 more
How many evaluations
31
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Perceived effectiveness
for Excess saliva (20 evaluations)
Side effects
Constipation Depressed mood 5 more
How many evaluations
30
Tried for
Excess saliva (19) Insomnia (15)
4 more
Treatment name(s)

(Ballard 30 French, Bard Feeding Tube, Corflo Merck 16FR) 5 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (10 evaluations)
Side effects
Hospitalization Pain 1 more
How many evaluations
13
Treatment name(s)

(AC Grace Unique E, Boots Vitamin E, Carlson Vitamin E) 28 more
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (20 evaluations)
Side effects
How many evaluations
20
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (103 evaluations)
Side effects
Heartburn Insomnia 16 more
How many evaluations
104

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 10
20s 112
30s 300
40s 907
50s 1,616
60s 1,684
70+ 966

Gender

Distribution of females vs. males

43% Females
57% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 37
20-29 years 190
30-39 years 578
40-49 years 1,101
50-59 years 1,307
60-69 years 811
70+ years 189

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,578
Not Diagnosed 224

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