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
555
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
179
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
141
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
92
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
68
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
62
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
44
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
30
Tried for
Insomnia (13) Excess saliva (9)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Type
Equipment
How many have tried
30
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
28

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) (486 evaluations)
Side effects
Fatigue Nausea 81 more
How many evaluations
491
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (85 evaluations)
Side effects
Drowsiness Fatigue 29 more
How many evaluations
113
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (474 evaluations)
Side effects
Constipation Abdominal bloating 31 more
How many evaluations
474
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (49 evaluations)
Side effects
Dry mouth Balance worsened 14 more
How many evaluations
89
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (88 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
88
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (45 evaluations)
Side effects
Diarrhea Gastrointestinal problems 4 more
How many evaluations
47
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (13 evaluations)
Side effects
Dry mouth Biting inner cheek 6 more
How many evaluations
16
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (8 evaluations)
Side effects
Dry mouth Constipation 10 more
How many evaluations
23
Tried for
Insomnia (13) Excess saliva (9)
4 more
Check to add this treatment to your profile
Treatment name(s)

(Neurx Diaphragm Pacing System)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (32 evaluations)
Side effects
Hospitalization Breathing difficulty 6 more
How many evaluations
32
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (45 evaluations)
Side effects
Weakness in arms Weakness in legs 3 more
How many evaluations
45

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 7
20s 126
30s 409
40s 1,126
50s 2,285
60s 2,530
70+ 1,505

Sex

Distribution of sex

44% Female
56% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 39
20-29 years 215
30-39 years 659
40-49 years 1,308
50-59 years 1,638
60-69 years 1,059
70+ years 240

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,645
Not Diagnosed 279

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