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 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, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people for amyotrophic lateral sclerosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
5,405
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
359

Data from patients with amyotrophic lateral sclerosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Compare treatments taken by people with amyotrophic lateral sclerosis

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Rilutek)
Perceived effectiveness
for amyotrophic lateral sclerosis (71 evaluations)
Side effects
chronic diarrhea headaches 4 more
Total evaluations
71
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (9 evaluations)
Side effects
fatigue paralysis of legs
Total evaluations
9
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with amyotrophic lateral sclerosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has amyotrophic lateral sclerosis on PatientsLikeMe?

  • 27 new patients joined this month
  • 13,916 say ALS is their primary condition

Age
Age Proportion # of patients
<20 3
20s 111
30s 465
40s 999
50s 2,534
60s 3,706
70+ 4,186
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 227
30-39 years 743
40-49 years 1,457
50-59 years 1,879
60-69 years 1,295
70+ years 340

Distribution of sex

Sex
Sex Proportion # of patients
Male 6,222
Female 5,098

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6,628
Not Diagnosed 296

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