ALS (Amyotrophic Lateral Sclerosis)

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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
Non-invasive Ventilator, No treatments, Baclofen
Wheelchair (powered), Non-invasive Ventilator, Modafinil
Amitriptyline, Glycopyrrolate, Suction Machine
Baclofen, Clonazepam, Magnesium
Massage Therapy, Baclofen, Range of Motion Exercises
Dextromethorphan with Quinidine, Amitriptyline, Citalopram
Ibuprofen, Tramadol, Gabapentin
Citalopram, Sertraline, Escitalopram
Polyethylene Glycol 3350, Docusate, Senna
Amitriptyline, Trazodone, Zolpidem
Lorazepam, Alprazolam, Clonazepam

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

Treatments reported by members Perceived effectiveness Overall rating of side effects # of Evaluations

(Rilutek)

346

(Lithmax, Lithionit, Maniprex, Lithionate)

87

(CoQmax, Bio Organics CoQ10 Capules, Trader Joe's Co Enzyme Q10, Whole Foods CoQ10 Chewable Tablets)

60

(Miorel, Gabalon, Mylan Baclofen, Kemstro)

51

(Vitagutt Vitamin E 1000, AC Grace Unique E, Spring Valley Vitamin E, Solgar Vitamin E)

39
31
28
27

(Vivi 40, Trilogy 100, Adaptive Servo Ventilator, SmartAir Plus)

27
22
21

(Pure Creatine, Jarrows Formulas Creatine Monohydrate)

21

(Low Dose Naltrexone (LDN), ReVia)

19

(Neurx Diaphragm Pacing System)

16

(Acupuncture - Facial, East Asian therapy, Brain abdominal acupuncture, Five Element Acupuncture)

16

These charts show data from ALS patients’ latest treatment evaluations
Last updated:

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has ALS (Amyotrophic Lateral Sclerosis) on PatientsLikeMe?

  • 6,536 patients have this condition
  • 37 new patients joined this month
  • 6,447 say ALS is their primary condition

Age
Age Proportion # of patients
<20 8
20s 97
30s 295
40s 851
50s 1,439
60s 1,459
70+ 794

Gender

Distribution of females vs. males

43% Females
57% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 32
20-29 years 185
30-39 years 555
40-49 years 1,050
50-59 years 1,227
60-69 years 754
70+ years 167

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,292
Not Diagnosed 200

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