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
36
Tried for
primary lateral sclerosis
(31)
stiffness/spasticity
(13)
Type
Prescription Drug
How many have tried
8
Tried for
stiffness/spasticity
(8)
primary lateral sclerosis
(1)
Type
Prescription Drug
How many have tried
4
Tried for
pain
(2)
muscle twitching (fasciculations)
(1)
1 more
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 (52 evaluations)
Total evaluations
59
Tried for
primary lateral sclerosis
(31)
stiffness/spasticity
(13)
Perceived effectiveness
for primary lateral sclerosis (13 evaluations)
Total evaluations
17
Tried for
primary lateral sclerosis
(12)
Perceived effectiveness
for stiffness/spasticity (12 evaluations)
Total evaluations
12
Tried for
stiffness/spasticity
(8)
primary lateral sclerosis
(1)
Perceived effectiveness
for stiffness/spasticity (3 evaluations)
Side effects
Total evaluations
3
Tried for
stiffness/spasticity
(2)
pain
(1)
1 more
Perceived effectiveness
for pain (1 evaluation)
Side effects
sleepiness
Total evaluations
3
Tried for
pain
(3)
stiffness/spasticity
(1)
Perceived effectiveness
for pain (2 evaluations)
Total evaluations
8
Tried for
pain
(2)
muscle twitching (fasciculations)
(1)
1 more
Perceived effectiveness
for fatigue (2 evaluations)
Side effects
Total evaluations
3
Tried for
fatigue
(4)
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
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
spacing out
Total evaluations
2
Tried for
depressed mood
(3)
Perceived effectiveness
for primary lateral sclerosis (6 evaluations)
Side effects
chronic constipation
Total evaluations
7
Tried for
primary lateral sclerosis
(3)
- 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?
- 825 patients have this condition
- 5 new patients joined this month
- 757 say PLS is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 1 | |
| 20s | 7 | |
| 30s | 17 | |
| 40s | 63 | |
| 50s | 176 | |
| 60s | 214 | |
| 70+ | 203 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 11 | |
| 20-29 years | 20 | |
| 30-39 years | 64 | |
| 40-49 years | 110 | |
| 50-59 years | 136 | |
| 60-69 years | 52 | |
| 70+ years | 8 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 281 | |
| Female | 403 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 383 | |
| Not Diagnosed | 84 |
These charts show data from PLS patients who have completed their condition history
Last updated: