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.

Common symptoms reported by people with 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:

Treatments taken by people with ALS (Amyotrophic Lateral Sclerosis)

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
477
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
172
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
113
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
76
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
62
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
53
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
46
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
31
Tried for
Insomnia (15) Excess saliva (7)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Type
Equipment
How many have tried
31
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
31

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 taken by people with ALS (Amyotrophic Lateral Sclerosis)

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Rilutek)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (361 evaluations)
Side effects
Fatigue Elevated liver enzymes 72 more
How many evaluations
365
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (62 evaluations)
Side effects
Drowsiness Excessive daytime sleepiness (somnolence) 25 more
How many evaluations
94
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (306 evaluations)
Side effects
Constipation Occasional constipation 22 more
How many evaluations
306
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (38 evaluations)
Side effects
Bladder problems Constipation 12 more
How many evaluations
67
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (80 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
80
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (37 evaluations)
Side effects
Diarrhea Gastrointestinal problems 4 more
How many evaluations
38
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (19 evaluations)
Side effects
Dry mouth Abdominal bloating 12 more
How many evaluations
22
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (10 evaluations)
Side effects
Dry mouth Constipation 9 more
How many evaluations
29
Tried for
Insomnia (15) Excess saliva (7)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (31 evaluations)
Side effects
Hospitalization Breathing difficulty 6 more
How many evaluations
31
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (13 evaluations)
Side effects
Hospitalization Diarrhea 3 more
How many evaluations
15

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 6
20s 124
30s 374
40s 1,070
50s 2,107
60s 2,351
70+ 1,354

Sex

Distribution of sex

44% Female
56% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 37
20-29 years 210
30-39 years 639
40-49 years 1,269
50-59 years 1,553
60-69 years 992
70+ years 220

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,369
Not Diagnosed 263

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