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 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
37
Treatment name(s)

(Rilutek)
Type
Prescription Drug
How many have tried
13
Tried for
primary lateral sclerosis (13)
Treatment name(s)

(Zanaflex)
Type
Prescription Drug
How many have tried
8
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
4
Tried for
stiffness/spasticity (2) pain (1)
1 more
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
4
Tried for
pain (3) stiffness/spasticity (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
4
Tried for
pain (2) muscle twitching (fasciculations) (1)
1 more
Treatment name(s)
Type
Surgery
How many have tried
3
Tried for
stiffness/spasticity (3)
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)

(Lunasin Duke Virtual Trial)
Type
Supplement
How many have tried
3

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 (54 evaluations)
Side effects
fatigue drowsiness 13 more
Total evaluations
60
Treatment name(s)

(Rilutek)
Perceived effectiveness
for primary lateral sclerosis (13 evaluations)
Side effects
chronic constipation fatigue 1 more
Total evaluations
17
Tried for
primary lateral sclerosis (13)
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
Tried for
stiffness/spasticity (2) pain (1)
1 more
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (1 evaluation)
Side effects
sleepiness
Total evaluations
1
Tried for
pain (3) stiffness/spasticity (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (2 evaluations)
Side effects
chronic constipation hair loss 1 more
Total evaluations
8
Tried for
pain (2) muscle twitching (fasciculations) (1)
1 more
Treatment name(s)
Perceived effectiveness
for stiffness/spasticity (1 evaluation)
Side effects
Total evaluations
1
Tried for
stiffness/spasticity (3)
Treatment name(s)

(Marijuana)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
increased appetite lack 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)

(Lunasin Duke Virtual Trial)
Perceived effectiveness
for primary lateral sclerosis (6 evaluations)
Side effects
chronic constipation
Total evaluations
7
  • 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 15
40s 65
50s 174
60s 206
70+ 195
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 112
50-59 years 136
60-69 years 52
70+ years 8

Distribution of sex

Sex
Sex Proportion # of patients
Male 274
Female 391

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 382
Not Diagnosed 85

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