Amyotrophic lateral sclerosis

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  • help researchers shorten the path to new treatments tomorrow

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What is amyotrophic lateral sclerosis?

ALS (amyotrophic lateral sclerosis) is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brainstem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Common symptoms reported by people with 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 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
603
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
160
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
71
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
63
Tried for
amyotrophic lateral sclerosis (62) Excess saliva (1)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
48
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
35
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
32
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 (10)
3 more
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
28

Data from patients with 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 amyotrophic lateral sclerosis

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

(Rilutek)
Perceived effectiveness
for amyotrophic lateral sclerosis (560 evaluations)
Side effects
Fatigue Nausea 84 more
Total evaluations
565
Check to add this treatment to your profile
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for Stiffness/Spasticity (101 evaluations)
Side effects
Drowsiness Dizziness 28 more
Total evaluations
125
Check to add this treatment to your profile
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for amyotrophic lateral sclerosis (591 evaluations)
Side effects
Constipation Abdominal bloating 37 more
Total evaluations
592
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for amyotrophic lateral sclerosis (92 evaluations)
Side effects
Diarrhea Acidosis 15 more
Total evaluations
92
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for amyotrophic lateral sclerosis (50 evaluations)
Side effects
Dry mouth Sexual dysfunction 11 more
Total evaluations
57
Tried for
amyotrophic lateral sclerosis (62) Excess saliva (1)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for amyotrophic lateral sclerosis (47 evaluations)
Side effects
Diarrhea Gastrointestinal problems 2 more
Total evaluations
49
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
Dry mouth Dry mouth at night 5 more
Total evaluations
16
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for amyotrophic lateral sclerosis (17 evaluations)
Side effects
Total evaluations
17
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (9 evaluations)
Side effects
Dry mouth Constipation 12 more
Total evaluations
26
Tried for
Insomnia (15) Excess saliva (10)
3 more
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for amyotrophic lateral sclerosis (13 evaluations)
Side effects
Hospitalization Diarrhea 4 more
Total evaluations
13
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with amyotrophic lateral sclerosis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Who has amyotrophic lateral sclerosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 6
20s 132
30s 449
40s 1,229
50s 2,401
60s 2,736
70+ 1,714
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 219
30-39 years 679
40-49 years 1,349
50-59 years 1,699
60-69 years 1,112
70+ years 260

Sex

Distribution of sex

44% Female
56% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,829
Not Diagnosed 282

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