Living with Primary central nervous system vasculitis
A rare condition in which blood vessels in the brain and spinal cord become inflamed, causing headaches, stroke-like events and thinking problems.
Understanding Primary central nervous system vasculitis
It causes nervous system symptoms in one area or many areas, with no other cause found, such as infection or another disease. Symptoms are non-specific and can include headache, strokes or mini-strokes with thinking problems, and weakness on one side of the body. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Stroke or mini-stroke (TIA)
- Weakness or paralysis on one side of the body
- Thinking and memory problems
- Trouble finding words (aphasia)
- Nausea and vomiting
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 autoimmune and inflammatory disease specialists, brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Vasculitis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Vasculitis 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 Vasculitis Foundation 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
GARD describes this as vasculitis with no other underlying cause found. It doesn't name a gene or describe an inheritance pattern.
Also known as: isolated angiitis of central nervous system; isolated angiitis of the central nervous system; pacns; pacns - primary angiitis of central nervous system; pcnsv; pcnsv - primary central nervous system vasculitis
Patient organizations
- Vasculitis FoundationPrimary central nervous system vasculitis · United States
- The Lauren Currie Twilight FoundationPrimary central nervous system vasculitis
You are more than your diagnosis
Perspectives from people navigating life with Primary central nervous system vasculitis.
Explore research for Primary central nervous system vasculitis
Explore actively recruiting Primary central nervous system vasculitis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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