Living with Limbic encephalitis with LGI1 antibodies
A rare immune condition of the brain causing memory and thinking changes, psychiatric symptoms, and seizures.
Understanding Limbic encephalitis with LGI1 antibodies
It begins with declining thinking skills, psychiatric changes, and seizures, especially a type called faciobrachial dystonic seizures. People may have confusion, hallucinations, paranoia, or aggressive outbursts, and persistent low blood sodium. It is most often not linked to a tumor, but tumors have been reported.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary describes these features:
- Decline in thinking and memory
- Psychiatric changes
- Seizures (faciobrachial dystonic seizures)
- Confusion
- Hallucinations
- Persistent low blood sodium
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 Encephalitis411
- 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 it as an immune condition with LGI1 antibodies. It is most often not linked to a tumor, but tumors such as small cell lung cancer and thymoma have been reported.
Also known as: limbic encephalitis with leucine-rich glioma-inactivated 1 antibodies
Patient organizations
- Encephalitis411Limbic encephalitis with LGI1 antibodies · United States
You are more than your diagnosis
Perspectives from people navigating life with Limbic encephalitis with LGI1 antibodies.
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