ALS (Amyotrophic Lateral Sclerosis)

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  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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
515
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Type
Prescription Drug
How many have tried
198
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
68
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
51
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
49
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
47
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
42
Tried for
Insomnia (16) Excess saliva (15)
4 more
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
42
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
42
Check to add this treatment to your profile
Treatment name(s)

(NatureMade Vitamin E)
Type
Supplement
How many have tried
40

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) (253 evaluations)
Side effects
Fatigue Elevated liver enzymes 61 more
How many evaluations
256
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (44 evaluations)
Side effects
Drowsiness Dizziness 21 more
How many evaluations
56
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (26 evaluations)
Side effects
Dry mouth at night Abdominal bloating 16 more
How many evaluations
31
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for Emotional lability (23 evaluations)
Side effects
Constipation Diarrhea 7 more
How many evaluations
30
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (18 evaluations)
Side effects
How many evaluations
20
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (27 evaluations)
Side effects
Diarrhea Stomach upset 4 more
How many evaluations
32
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (11 evaluations)
Side effects
Constipation Depressed mood 4 more
How many evaluations
30
Tried for
Insomnia (16) Excess saliva (15)
4 more
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (56 evaluations)
Side effects
Diarrhea Charlie horses in calves 14 more
How many evaluations
56
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (10 evaluations)
Side effects
Hospitalization Pain 1 more
How many evaluations
13
Check to add this treatment to your profile
Treatment name(s)

(NatureMade Vitamin E)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (19 evaluations)
Side effects
How many evaluations
19

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 12
20s 110
30s 305
40s 917
50s 1,653
60s 1,720
70+ 981

Gender

Distribution of females vs. males

43% Females
57% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 36
20-29 years 193
30-39 years 584
40-49 years 1,115
50-59 years 1,322
60-69 years 816
70+ years 190

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,623
Not Diagnosed 231

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