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

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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
452
Tried for
primary lateral sclerosis (11)
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
102

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 (6 evaluations)
Side effects
balance problems drowsiness 1 more
Total evaluations
6
Tried for
primary lateral sclerosis (11)
Treatment name(s)

(Rilutek)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
  • 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?

  • 2 new patients joined this month
  • 866 say PLS is their primary condition

Age
Age Proportion # of patients
<20 0
20s 5
30s 18
40s 56
50s 156
60s 255
70+ 296
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 11
20-29 years 19
30-39 years 64
40-49 years 111
50-59 years 134
60-69 years 53
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 317
Female 475

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 384
Not Diagnosed 82

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