What is ALS?

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 Patients' Latest Severity My Current Severity  
Severity
Severe
Moderate
Mild
None
Constipation None Mild Moderate Severe
Emotional lability None Mild Moderate Severe
Excess saliva None Mild Moderate Severe
Excessive yawning None Mild Moderate Severe
Fasciculations None Mild Moderate Severe
Stiffness/Spasticity None Mild Moderate Severe

What do patients take to treat ALS and its symptoms?

Commonly prescribed and frequently used treatments

Treatment name Efficacy Overall rating of side effects # of Evaluations
Riluzole
(Rilutek)
269
Lithium Carbonate
(Lithosun, Teralithe, Maniprex, Lithionate)
85
CoQ10 (CoEnzyme Q10)
(Trader Joe's Co Enzyme Q10, Nutri-Dyn CoQ10, Pure encapsulations CoQ10, Q Avail Nano powder)
51
Vitamin E
(Vitamin E topical, Vitalady Tender Dry E, Whole Foods Vitamin E, Spring Valley Vitamin E)
34
29
Baclofen
(Kemstro, DOM-Baclofen, Gabalon, Spinax)
27
26
23
Non-invasive Ventilator
(Elisee 150, BiPAP AVAPS, SmartAir Plus, NIPPV other than BiPAP)
19
Creatine Monohydrate
(Jarrows Formulas Creatine Monohydrate, Pure Creatine)
18
Vitamin C (ascorbic acid)
(Usana PolyC-6, Esther-C, Natural Factors Vitamin C, WSN Vitamin C)
18
Naltrexone
(Low Dose Naltrexone (LDN), ReVia)
18
Acupuncture
(Forever Needle implants, East Asian therapy, 4 needle technique, Acupuncture low-concentration alkali injection therapy)
15
10
8

These charts show data from ALS patients' latest treatment evaluations

Who has ALS at PatientsLikeMe?

<20 20-29 30-39 40-49 50-59 60-69 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 yrs 27
20-29 yrs 161
30-39 yrs 499
40-49 yrs 905
50-59 yrs 1018
60-69 yrs 609
70+ yrs 135
Diagnosis status
Diagnosis status # of patients Proportion
Diagnosed 3570
Not Officially Diagnosed 139

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