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.

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What is it like to have ALS?

Common symptoms How bad it is What people are taking for it
Severity
Severe
Moderate
Mild
None
Baclofen, Clonazepam, Gabapentin
Non-invasive Ventilator, Baclofen
Amitriptyline, Glycopyrrolate, Suction Machine
Wheelchair (powered), Non-invasive Ventilator, Modafinil
Massage Therapy, Baclofen, Range of Motion Exercises
Dextromethorphan with Quinidine, Amitriptyline, Citalopram
Ibuprofen, Gabapentin, Hydrocodone-Acetaminophen
Sertraline, Citalopram, Escitalopram
Amitriptyline, Trazodone, Zolpidem
Polyethylene Glycol 3350, Docusate, Senna
Lorazepam, Alprazolam, Clonazepam

What do patients take to treat ALS and its symptoms?

Treatments reported by members Perceived effectiveness Overall rating of side effects # of Evaluations
(Rilutek)
307
(Eskalith CR, Quilonum SR, Lithosun, Camcolit)
86
(CoQsol-CF, Whole Foods CoQ10 Chewable Tablets, Nutraceutical Sciences Institute CoQ10, Nature's Bounty CoQ10)
55
(DOM-Baclofen, Stelax, Mylan Baclofen, Spinax)
44
(Vitamin E topical, AC Grace Unique E, Vitagutt Vitamin E 1000, NSI Vitamin E)
36
30
28
26
(Resmed S9 VPAP ST-A, BiPAP w/humidifier, Trilogy 100, Vivi 40)
23
20
(ReVia, Low Dose Naltrexone (LDN))
19
(Jarrows Formulas Creatine Monohydrate, Pure Creatine)
18
(Acupuncture - Facial, Electronic Acupunture Pen Stimulation, Scalp Acupuncture, Acupuncture Electronic Stimulated)
16
(Neurx Diaphragm Pacing System)
13
9

These charts show data from ALS patients' latest treatment evaluations

Who has ALS at PatientsLikeMe?

<20 20s 30s 40s 50s 60s 70+
Current Age
Distribution of females vs. males
Gender
42% Females
58% Males
Age at first symptom
Age at first symptom # of patients Proportion
0-19 years 28
20-29 years 169
30-39 years 535
40-49 years 1,001
50-59 years 1,149
60-69 years 682
70+ years 152
Diagnosis status
Diagnosis status # of patients Proportion
Not Diagnosed 173
Diagnosed 4,000

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