Your Health: Brain-on-fire disease

Published: May. 12, 2023 at 4:18 PM EDT
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LANSING, Mich. (WILX) - Imagine being totally fine one day, then the next, you’re having hallucinations, seizures, memory loss and even trouble talking.

It’s called brain-on-fire disease.

Hunting, mountain biking, horseback riding, you name it, Katie Miller would do it until she couldn’t.

“I just didn’t feel like myself, like normal,” she said.

“Katie said, ‘Mom, I feel like my brain snapped,’” her mom, Colleen Miller, recalled.

Doctors admitted Katie into a psychiatric ward, but what was happening to her wasn’t mental, it was physical.

“What happens is you’re perfectly normal one day and suddenly overnight, this person can become paranoid, can start having visual hallucinations, auditory hallucinations,” said Dr. Stacy Clardy.

Anti-NMDA receptor encephalitis, also known as brain-on-fire disease, is misdiagnosed as a psychiatric disorder in up to 40% of patients.

“So, for many of the females, especially after puberty, they can develop what’s called an ovarian dermoid cyst or an ovarian teratoma,” Clardy said.

These cysts often have hair and teeth in them. The immune system sees it as foreign and attacks it, but there is a component of tissue that actually is brain tissue.

Within four days, Katie was catatonic and needed a ventilator to breathe. There is no single approved treatment and that’s why a five-year, nationwide clinical trial is testing whether a drug called Inebilizumab will stop the assault on the brain.

Katie had her cyst removed, but she can’t remember three months of her life. But she’s on her way to recovery.

More: Your Health

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