In the Loop

News and views from across Mayo Clinic

March 19, 2019

Right Diagnosis Leads to Relief From Autoimmune Encephalitis

By In the Loop

Staff in Mayo Clinic's Center for Multiple Sclerosis and Autoimmune Neurology are researching how the immune system can target the nervous system, and more importantly for patients, how to treat it.

Shuronda Hester had just started college and was looking forward to a new chapter in her young life when mysterious and frightening symptoms derailed her plans. Shuronda began having seizures and becoming "increasingly confused, at one point asking for her great-grandmother who passed away eight years ago," reports First Coast News. Three trips to a hospital in Tallahassee left her without answers — or treatment.

When Shuronda's personality began to change, her mother, Tameka Lewis, brought her to Mayo Clinic's Florida campus. "Had she stayed in Tallahassee, with the way that her behavior was, she would have been admitted into a psych ward and not gotten the proper treatment that she actually needed," Tameka tells the station.

In another part of the country, Denise Krivach was also looking forward to a new chapter. She'd recently retired and was making plans to build a home in Montana. But then she started forgetting things. "I couldn't find my socks — I couldn't find anything," Denise, a former radiologist, tells the Rochester Post-Bulletin. "'This isn't me,' that's what I kept saying — 'this isn't me,'" she tells the paper. Doctors in Montana diagnosed her with early onset dementia. But Denise didn't think the diagnosis fit. "The only thought I could hold onto was, 'there's something wrong, and I have to get this fixed.'" She headed to Mayo Clinic's Rochester campus for another opinion.

At Mayo Clinic, the women learned their symptoms were caused by the same condition: autoimmune encephalitis. "It's an autoimmune disease in which your body makes antibodies that essentially go after your brain in the same way they would fight off an infection," Jason Siegel, M.D., a neurologist at Mayo Clinic's Florida campus, tells First Coast News. Or, as the Post-Bulletin explains: "Krivach's brain was under attack — by her own immune system."

The idea that the immune system could affect the brain is a fairly new one, another Post-Bulletin story reports. But not quite so new at Mayo Clinic, where the country's first Autoimmune Neurology Clinic was established in 2006. Today, staff at the expanded Center for Multiple Sclerosis and Autoimmune Neurology at Mayo Clinic are working to learn more about the ways the immune system can target the nervous system — and how to treat it when it does.

For Shuronda and Denise, the encephalitis diagnosis marked a turning point. They had answers and, importantly, a path for moving forward. The diagnosis gave Denise "treatment options that not only stopped her cognitive decline but reversed it," the Post-Bulletin reports. Though she has some lingering issues, she tells the publication that she's "so, so, so much better," and is again thinking about building home in Montana, a dream that at one point had begun to seem out of reach.

Shuronda also responded to treatment and has been able to continue her studies. "No matter what happened or what was thrown her way, she persevered," Shuronda's mother tells First Coast News. "She's determined, and she has goals. She knows what she wants." And what she wants may lead her back to Mayo Clinic — but this time, as a nurse instead of a patient.

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Tags: autoimmune encephalitis, Center for Multiple Sclerosis and Autoimmune Neurology, Dr. Jason Siegel, Mayo Clinic in Florida, Mayo Clinic in Rochester, Patient Stories

My wife was diagnosed with enciphilitas about 14 months ago.
She started with the shingles virus on the side of her body. The doctor gave us some medication which I don't remember. After a couple of weeks she started having double vision. Then looking her strength on her left leg and right arm. She also could not swallow her silica and started choking. I put her in the hospital and the did CT scans and spinal taps and eliminated all causes and couldn't find out what was causing the symptoms. She has been on a respirator and feeding line ever since. At this point she is barely moving her arms and legs and has very little recognitions.
I'm relying on my faith and someone that has strong faith that we have a shot at making progress with this incredible disease that came out of no where. In God WE TRUST.

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