Primary 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

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What is primary lateral sclerosis?

Primary lateral sclerosis (PLS) is a rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases.

Common symptoms reported by people with primary 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 primary lateral sclerosis

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

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
436
Tried for
primary lateral sclerosis (20)
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
98

Data from patients with primary 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 primary lateral sclerosis

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

(Mylan-Baclofen)
Perceived effectiveness
for primary lateral sclerosis (22 evaluations)
Side effects
drowsiness fatigue 5 more
Total evaluations
22
Tried for
primary lateral sclerosis (20)
Treatment name(s)

(Rilutek)
Perceived effectiveness
for primary lateral sclerosis (13 evaluations)
Side effects
chronic constipation fatigue 1 more
Total evaluations
14
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

  • 1 new patients joined this month
  • 825 say PLS is their primary condition

Age
Age Proportion # of patients
<20 0
20s 6
30s 19
40s 60
50s 166
60s 248
70+ 248
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 11
20-29 years 20
30-39 years 64
40-49 years 109
50-59 years 133
60-69 years 52
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 303
Female 449

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 379
Not Diagnosed 83

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