Living with Progressive multifocal leukoencephalopathy
A brain condition caused by the JC virus that damages the protective coating of nerves, mostly in people with weakened immune systems.
Understanding Progressive multifocal leukoencephalopathy
It is caused by the JC virus (JCV). It rarely occurs in organ transplant patients, people on long-term corticosteroid or immune-suppressing treatment, and people with cancers such as Hodgkin's disease or lymphoma. GARD says it is most common in people with AIDS. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in the arms or legs
- Weakness or paralysis on one side of the body
- Trouble speaking clearly (dysarthria)
- Poor balance when walking (gait ataxia)
- Headache
- Changes in thinking
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
United Leukodystrophy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: United Leukodystrophy 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 United Leukodystrophy Foundation
- 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 PML is caused by the JC virus. It tends to occur when the immune system is weakened.
Also known as: multifocal leukoencephalopathy; pml; pml - progressive multifocal leukoencephalopathy; pmle - progressive multifocal leukoencephalopathy; progressive multifocal leukoencephalitis
Patient organizations
- United Leukodystrophy FoundationProgressive multifocal leukoencephalopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Progressive multifocal leukoencephalopathy.
Explore research for Progressive multifocal leukoencephalopathy
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- Recruiting studies from ClinicalTrials.gov
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