Primary lateral sclerosis
We’re all in this for good.
- 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.
Last updated:
Treatments taken by people with primary lateral sclerosis
Treatment name(s)
Type
How many have tried
Tried for
Type
Prescription Drug
How many have tried
25
Tried for
primary lateral sclerosis
(22)
stiffness/spasticity
(7)
Type
Prescription Drug
How many have tried
3
Tried for
muscle twitching (fasciculations)
(1)
pain
(1)
1 more
Treatment name(s)
Baclofen Pump Implantation
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.
Last updated:
Compare treatments taken by people with primary lateral sclerosis
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for primary lateral sclerosis (27 evaluations)
Total evaluations
33
Tried for
primary lateral sclerosis
(22)
stiffness/spasticity
(7)
Perceived effectiveness
for primary lateral sclerosis (13 evaluations)
Total evaluations
14
Tried for
primary lateral sclerosis
(9)
Perceived effectiveness
for stiffness/spasticity (4 evaluations)
Side effects
excessive daytime sleepiness (somnolence)
sleepiness
Total evaluations
4
Tried for
stiffness/spasticity
(4)
Perceived effectiveness
for stiffness/spasticity (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain
(1)
primary lateral sclerosis
(1)
1 more
Perceived effectiveness
for muscle twitching (fasciculations) (1 evaluation)
Total evaluations
8
Tried for
muscle twitching (fasciculations)
(1)
pain
(1)
1 more
Perceived effectiveness
for primary lateral sclerosis (6 evaluations)
Side effects
chronic constipation
Total evaluations
7
Tried for
primary lateral sclerosis
(3)
Treatment name(s)
Baclofen Pump Implantation
Perceived effectiveness
for stiffness/spasticity (1 evaluation)
Side effects
Total evaluations
1
Tried for
stiffness/spasticity
(2)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
grogginess
Total evaluations
1
Tried for
anxious mood
(1)
pain
(1)
1 more
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
spacing out
Total evaluations
2
Tried for
depressed mood
(2)
Perceived effectiveness
for stiffness/spasticity (3 evaluations)
Side effects
Total evaluations
3
Tried for
pain
(1)
stiffness/spasticity
(1)
- 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.
Last updated:
Who has primary lateral sclerosis on PatientsLikeMe?
- 1 new patients joined this month
- 814 say PLS is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 6 | |
| 30s | 16 | |
| 40s | 62 | |
| 50s | 169 | |
| 60s | 250 | |
| 70+ | 237 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 11 | |
| 20-29 years | 20 | |
| 30-39 years | 63 | |
| 40-49 years | 108 | |
| 50-59 years | 133 | |
| 60-69 years | 52 | |
| 70+ years | 8 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 302 | |
| Female | 443 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 377 | |
| Not Diagnosed | 84 |
These charts show data from PLS patients who have completed their condition history
Last updated: