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
5139
Treatment name(s)

(Radicava)
Type
Prescription Drug
How many have tried
300

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 (273 evaluations)
Side effects
fatigue nausea 52 more
Total evaluations
276
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?

  • 37 new patients joined this month
  • 13006 say ALS is their primary condition

Age
Age Proportion # of patients
<20 3
20s 105
30s 524
40s 1170
50s 2699
60s 3553
70+ 3136
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 41
20-29 years 234
30-39 years 739
40-49 years 1460
50-59 years 1863
60-69 years 1278
70+ years 331

Distribution of sex

Sex
Sex Proportion # of patients
Male 5845
Female 4716

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6596
Not Diagnosed 301

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