Living with Primary lateral sclerosis
A rare disease of the nerve cells that control voluntary muscles, causing leg stiffness and weakness, balance problems and speech changes.
Understanding Primary lateral sclerosis
Leg problems such as weakness, stiffness (spasticity) and balance trouble are often seen first. Hand clumsiness and speech changes can be early symptoms too. Adult PLS usually begins in adulthood or later life. A juvenile form also exists.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stiff muscles (spasticity)
- Weakness in the legs
- Balance problems and a stiff walk
- Hand clumsiness
- Slurred or slowed speech
- Trouble swallowing
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in SPG7 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
ALS Association and Spastic Paraplegia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: ALS Association, Spastic Paraplegia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with ALS Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cause of adult PLS is unknown and most cases occur in people with no family history. The juvenile form is caused by changes in the ALS2 gene and is autosomal recessive. GARD also lists the SPG7 gene for this condition.
Also known as: adult-onset pls; adult-onset primary lateral sclerosis; lateral sclerosis; pls
Patient organizations
- ALS AssociationPrimary lateral sclerosis · United States
- Spastic Paraplegia FoundationPrimary lateral sclerosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary lateral sclerosis.
Explore research for Primary lateral sclerosis
Explore actively recruiting Primary lateral sclerosis studies with HealthSpark.
Find actively recruiting studies for Primary lateral sclerosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Primary lateral sclerosis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Primary lateral sclerosis
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Primary lateral sclerosis experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.