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
31
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
10
Tried for
primary lateral sclerosis (10)
Treatment name(s)

(Zanaflex)
Type
Prescription Drug
How many have tried
5
Treatment name(s)

(Mobility scooter)
Type
Equipment
How many have tried
4
Tried for
fatigue (4)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
3
Tried for
pain (1) primary lateral sclerosis (1)
1 more
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
3
Tried for
anxious mood (1) pain (1)
2 more
Treatment name(s)

(Marijuana)
Type
Other
How many have tried
3
Tried for
stiffness/spasticity (3) anxious mood (1)
1 more
Treatment name(s)

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

(Flexeril)
Type
Prescription Drug
How many have tried
3
Tried for
pain (2) stiffness/spasticity (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
muscle twitching (fasciculations) (1) pain (1)
1 more

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 (31 evaluations)
Side effects
drowsiness dry mouth 12 more
Total evaluations
39
Treatment name(s)

(Rilutek)
Perceived effectiveness
for primary lateral sclerosis (13 evaluations)
Side effects
chronic constipation fatigue 1 more
Total evaluations
16
Tried for
primary lateral sclerosis (10)
Treatment name(s)

(Zanaflex)
Perceived effectiveness
for stiffness/spasticity (11 evaluations)
Side effects
dizziness dry mouth 3 more
Total evaluations
11
Treatment name(s)

(Mobility scooter)
Perceived effectiveness
for fatigue (2 evaluations)
Side effects
Total evaluations
3
Tried for
fatigue (4)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1) primary lateral sclerosis (1)
1 more
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
grogginess
Total evaluations
3
Tried for
anxious mood (1) pain (1)
2 more
Treatment name(s)

(Marijuana)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
increased appetite loss of energy
Total evaluations
2
Tried for
stiffness/spasticity (3) anxious mood (1)
1 more
Treatment name(s)

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

(Flexeril)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (2) stiffness/spasticity (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for muscle twitching (fasciculations) (1 evaluation)
Side effects
chronic constipation hair loss 1 more
Total evaluations
8
Tried for
muscle twitching (fasciculations) (1) pain (1)
1 more
  • 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 0
20s 8
30s 17
40s 62
50s 182
60s 232
70+ 220
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 11
20-29 years 20
30-39 years 63
40-49 years 109
50-59 years 134
60-69 years 52
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 292
Female 434

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 378
Not Diagnosed 86

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