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
5094
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
287

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 (307 evaluations)
Side effects
nausea fatigue 56 more
Total evaluations
310
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (70 evaluations)
Side effects
fatigue breathing difficulty 27 more
Total evaluations
70
  • 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?

  • 31 new patients joined this month
  • 12887 say ALS is their primary condition

Age
Age Proportion # of patients
<20 3
20s 111
30s 528
40s 1188
50s 2729
60s 3512
70+ 3017
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 233
30-39 years 737
40-49 years 1461
50-59 years 1858
60-69 years 1277
70+ years 330

Distribution of sex

Sex
Sex Proportion # of patients
Male 5782
Female 4672

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6589
Not Diagnosed 300

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