ALS (Amyotrophic Lateral Sclerosis)

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

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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
519
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
130
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
86
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
65
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
61
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
32
Tried for
Insomnia (15) 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
31
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
30

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) (422 evaluations)
Side effects
Fatigue Nausea 74 more
How many evaluations
427
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (76 evaluations)
Side effects
Drowsiness Fatigue 28 more
How many evaluations
105
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (414 evaluations)
Side effects
Constipation Flatulence 30 more
How many evaluations
414
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (45 evaluations)
Side effects
Bladder problems Constipation 11 more
How many evaluations
80
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (84 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
84
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (43 evaluations)
Side effects
Diarrhea Gastrointestinal problems 4 more
How many evaluations
45
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (17 evaluations)
Side effects
Dry mouth Biting inner cheek 6 more
How many evaluations
20
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (10 evaluations)
Side effects
Dry mouth Constipation 10 more
How many evaluations
31
Tried for
Insomnia (15) 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)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (13 evaluations)
Side effects
Hospitalization Diarrhea 3 more
How many evaluations
14

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 127
30s 385
40s 1,111
50s 2,216
60s 2,491
70+ 1,446

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 211
30-39 years 650
40-49 years 1,297
50-59 years 1,605
60-69 years 1,043
70+ years 234

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,549
Not Diagnosed 274

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