Primary lateral sclerosis

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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 with 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
41
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
15
Tried for
primary lateral sclerosis (15)
Treatment name(s)

(Zanaflex)
Type
Prescription Drug
How many have tried
9
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
3
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
3
Tried for
Pain (3) depressed mood (1)
Treatment name(s)

(Marijuana)
Type
Other
How many have tried
3
Tried for
stiffness/spasticity (3)
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (3)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
muscle twitching (fasciculations) (1) Pain (1)
1 more
Treatment name(s)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
3
Treatment name(s)
Type
Surgery
How many have tried
2
Tried for
stiffness/spasticity (2)

Data from patients with primary lateral sclerosis, who reported starting treatments within 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 (52 evaluations)
Side effects
drowsiness fatigue 12 more
Total evaluations
59
Treatment name(s)

(Rilutek)
Perceived effectiveness
for primary lateral sclerosis (14 evaluations)
Side effects
chronic constipation fatigue 2 more
Total evaluations
18
Tried for
primary lateral sclerosis (15)
Treatment name(s)

(Zanaflex)
Perceived effectiveness
for stiffness/spasticity (12 evaluations)
Side effects
chronic fatigue dizziness 4 more
Total evaluations
12
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
for stiffness/spasticity (3 evaluations)
Side effects
Total evaluations
3
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (3 evaluations)
Side effects
constipation dry mouth 1 more
Total evaluations
3
Tried for
Pain (3) depressed mood (1)
Treatment name(s)

(Marijuana)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
lack of energy
Total evaluations
2
Tried for
stiffness/spasticity (3)
Treatment name(s)

(Celexa)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
spaced out
Total evaluations
2
Tried for
depressed mood (3)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for muscle twitching (fasciculations) (1 evaluation)
Side effects
chronic constipation hair loss
Total evaluations
6
Tried for
muscle twitching (fasciculations) (1) Pain (1)
1 more
Treatment name(s)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for primary lateral sclerosis (4 evaluations)
Side effects
chronic constipation
Total evaluations
5
Treatment name(s)
Perceived effectiveness
for stiffness/spasticity (1 evaluation)
Side effects
Total evaluations
1
Tried for
stiffness/spasticity (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with primary lateral sclerosis, who reported starting treatments within the last 5 years.
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Who has primary lateral sclerosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 2
20s 6
30s 16
40s 55
50s 171
60s 197
70+ 165
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 136
60-69 years 52
70+ years 8

Sex

Distribution of sex

59% Female
41% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 375
Not Diagnosed 84

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