Living with Paraneoplastic cerebellar degeneration
A rare immune-related condition that damages the balance center of the brain, linked to a hidden cancer elsewhere in the body.
Understanding Paraneoplastic cerebellar degeneration
It is caused by the immune system reacting to a cancer, often one that hasn't been found yet, in another part of the body. The cancer is usually a carcinoma or lymphoma. Problems get worse over time and can begin at any age.
Signs & symptoms
Symptoms vary from person to person. GARD lists and describes these:
- Unsteady balance and coordination (ataxia)
- Slurred speech (dysarthria)
- Quick, involuntary eye movements (nystagmus)
- Double vision
- 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
Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Global Autoimmune Institute
- 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 Global Autoimmune Institute
- 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 the immune system reacts to a cancer, often undetected, in a part of the body other than the brain's cerebellum. The cancer is usually a carcinoma or lymphoma.
Also known as: cerebellar ataxia due to neoplasia
Patient organizations
- Global Autoimmune InstituteParaneoplastic cerebellar degeneration · United States
You are more than your diagnosis
Perspectives from people navigating life with Paraneoplastic cerebellar degeneration.
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