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Valley woman shares experience after diagnosed with rare ‘brain on fire’ condition

From February until May, Reyna said her memory is essentially blank.

PHOENIX — Reyna Felix didn’t know what was going on, she doesn’t even remember.

"My mom would talk to me and I was like who are you," Reyna Felix said.

From February until May, Reyna said her memory is essentially blank. However she took trips, her friends and family said she was experiencing mood swings and then on April 6th a shift as a 911 dispatcher went wrong.

"I was crying at my desk, I wasn't acting right. And then around midnight, I went into a seizure," Felix said.

Her husband, Michael, would get the call but not know what to do, as the concerns over COVID-19 prevented him from being by her side.

“Oh my god, what do I do now? But there is nothing to do.” Michael Felix said.

However, Reyna would be released, starting a pattern over the next couple of weeks. Reyna would continue to have seizures, but doctors were unable to tell what was wrong with her.

When hearing that the normally happy-go-lucky 27-year-old was having mood swings, some doctors suggested it could be a mental disorder like schizophrenia. But that didn’t make sense to the family.

“It didn’t make sense to me because it was all of a sudden,” Michael said.

After yet another seizure, Reyna would have a spinal tap that would provide the answer: Anti-NMDA Receptor Encephalitis also known as "brain on fire."

"This is an autoimmune neurological condition," Dr. Ram Narayan said.

Narayan was Reyna’s neurologist Barrow Neurological Institute. He said it's literally a one in a million condition that has been discovered recently. 

In basic terms, the body's own immune system attacks brain cells receptors leading to a brain becoming inflamed. The symptoms can include both behavioral changes and seizures.

"If the immune system destroys those receptors those neurons don't work that well," Narayan said.

So what is this condition?

Narayan said it’s when the body creates antibodies that end up attacking the brain’s neuron receptors. This creates a whole host of problems.

The condition has been around for some time under different names but helped launch a subsection in the field of neurology. Looking at how conditions like this, can manifest itself on the behavioral side.

Narayan said doctors and others are getting better at diagnosing the disease but it can be difficult. According to the doctor, the first symptoms can be an extreme reaction, elsewhere described as a flu. After that, there can be a host of other symptoms, including memory loss, mood changes and seizures.

The issue is sometimes not all those symptoms occur and an individual could be misdiagnosed with a mental disorder. However, he says doctors are getting better at recognizing the signs.

Better yet, the condition is treatable. Narayan estimated that about 80% of folks who have the condition have very positive outcomes in two years. However, recovery can be difficult.

Reyna had to learn to eat and walk again. However, after a summer of recovery, she is back home, and almost back to normal.

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