Living with Post poliomyelitis syndrome
A condition that can affect people who had polio years earlier, with new muscle weakness, pain and tiredness.
Understanding Post poliomyelitis syndrome
Symptoms and severity vary. Only a polio survivor can develop PPS. Polio is contagious, but PPS is not. It can start at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- New muscle weakness
- Muscle and joint pain
- Fatigue
- Trouble climbing stairs and walking
- Excessive daytime sleepiness
- Muscle shrinking (atrophy)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Post-Polio Health International may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Post-Polio Health International
- 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 Post-Polio Health International
- 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
GARD says only a polio survivor can develop PPS. It doesn't describe a cause beyond this.
Also known as: post polio syndrome; post-polio progressive muscular atrophy; postpolio muscular atrophy; postpolio sequelae; postpolio syndrome; postpoliomyelitic syndrome
Patient organizations
- Post-Polio Health InternationalPost poliomyelitis syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Post poliomyelitis syndrome.
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