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

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
437
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Type
Prescription Drug
How many have tried
169
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Type
Prescription Drug
How many have tried
60
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Type
Equipment
How many have tried
54
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Type
Supplement
How many have tried
52
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
50
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
39
Check to add this treatment to your profile
Type
Other
How many have tried
38
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Type
Equipment
How many have tried
32
Check to add this treatment to your profile
Treatment name(s)
Type
Nutrition/Diet
How many have tried
32

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) (244 evaluations)
Side effects
Fatigue Elevated liver enzymes 62 more
How many evaluations
247
Check to add this treatment to your profile
Treatment name(s)

(Mylan Baclofen)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (33 evaluations)
Side effects
Drowsiness Excessive daytime sleepiness (somnolence) 22 more
How many evaluations
58
Check to add this treatment to your profile
Treatment name(s)

(Nuedexta)
Perceived effectiveness
for Emotional lability (29 evaluations)
Side effects
Constipation Diarrhea 10 more
How many evaluations
42
Check to add this treatment to your profile
Treatment name(s)

(BiPAP w/humidifier)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (22 evaluations)
Side effects
Dry mouth Abdominal bloating 15 more
How many evaluations
26
Check to add this treatment to your profile
Treatment name(s)

(Virgin Coconut Oil)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (32 evaluations)
Side effects
Diarrhea Stomach upset 3 more
How many evaluations
37
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (62 evaluations)
Side effects
Diarrhea Charlie horses in calves 13 more
How many evaluations
62
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (15 evaluations)
Side effects
How many evaluations
15
Check to add this treatment to your profile
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (102 evaluations)
Side effects
Heartburn Insomnia 16 more
How many evaluations
103
Check to add this treatment to your profile
Treatment name(s)

(MIC-KEY G-tube)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (9 evaluations)
Side effects
Hospitalization Diarrhea 1 more
How many evaluations
11
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for ALS (Amyotrophic Lateral Sclerosis) (121 evaluations)
Side effects
Fatigue Diarrhea 27 more
How many evaluations
135

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 116
30s 347
40s 963
50s 1,847
60s 1,999
70+ 1,150

Sex

Distribution of sex

43% Female
57% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 36
20-29 years 206
30-39 years 612
40-49 years 1,189
50-59 years 1,436
60-69 years 898
70+ years 206

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,982
Not Diagnosed 249

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