Living with Primary central nervous system lymphoma
A rare lymphoma that starts in the lymph tissue of the brain or spinal cord, and sometimes the eye, mostly in adults.
Understanding Primary central nervous system lymphoma
Because the eye is close to the brain, it can also start in the eye (ocular lymphoma). Symptoms depend on which parts of the central nervous system are affected. It usually appears in adults and older adults. People with a weakened immune system, such as those with AIDS or an organ transplant, appear to have a higher risk.
Signs & symptoms
Symptoms vary based on which parts of the nervous system are affected. GARD lists these:
- Headaches
- Nausea and vomiting
- Seizures
- Arm or leg weakness
- Confusion
- Double vision or hearing loss
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 blood and bone marrow specialists, brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Blood Cancer United 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 says the exact cause is poorly understood. A weakened immune system, such as with AIDS or after an organ transplant, appears to raise the risk.
Also known as: central nervous system lymphoma; cns lymphoma; lymphoma of central nervous system; malignant lymphomas of cns; malignant lymphomas of the cns; microglioma
Patient organizations
- Blood Cancer UnitedPrimary central nervous system lymphoma · United States
- Lymphoma Research FoundationPrimary central nervous system lymphoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary central nervous system lymphoma.
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