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
5188
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
314

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 (248 evaluations)
Side effects
nausea tiredness 44 more
Total evaluations
251
Treatment name(s)

(Radicava)
Perceived effectiveness
for amyotrophic lateral sclerosis (68 evaluations)
Side effects
fatigue breathing difficulty 27 more
Total evaluations
68
  • 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?

  • 48 new patients joined this month
  • 13143 say ALS is their primary condition

Age
Age Proportion # of patients
<20 4
20s 109
30s 524
40s 1147
50s 2679
60s 3602
70+ 3238
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 233
30-39 years 738
40-49 years 1460
50-59 years 1868
60-69 years 1282
70+ years 331

Distribution of sex

Sex
Sex Proportion # of patients
Male 5901
Female 4774

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6604
Not Diagnosed 300

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