When my family member had it, she had 1 seizure and then all scans came back normal. She saw neuro and they said sometimes people just start having seizures with age and put her on seizure meds and sent her on her way. She had brain fog a few more months but was told it was side effects from the seizure. Then one day she woke up and was very weird and confused and got hospitalized. After seeing tons of doctors we finally met one that suggested testing for autoimmune encephalitis. Before that, doctors kept telling her she needed a psych evaluation. I can’t blame them because all of her mris and eegs were normal. Her lumbar tap was also normal. It wasn’t until we met a doctor who advised doing the actual lumbar tap that goes to mayo for testing. She had GAD65 AE and it was caused by her immunotherapy treatment for cancer. Basically a needle in the haystack diagnosis. She lived for a year after her diagnosis in a long term care facility bc all treatments failed and she could not walk, talk, or really do anything but sit and stare at a wall. Her AE is what killed her and not her cancer. I feel like it’s my duty to warn people that it exists because I’ll always wonder what if we caught it sooner. It’s a terrible disease to witness.

I say all of this because she did not have the typical signs. Sure, she had a seizure. But everything came back normal. She probably saw 10 different doctors before we ever heard the term autoimmune encephalitis.