Sharing Mayo Clinic: A frightening fight against autoimmune encephalitis

Sharing Mayo Clinic: A frightening fight against autoimmune encephalitis

By
Dana Sparks

November 6, 2016

It started with ear pain in the spring of 2014. Within a few weeks, Gloria Pena’s earache escalated into confusion and sensory loss.

“I thought it was a bad cold with an earache,” Gloria recalls. “But one day I picked up my son from school and didn’t remember the way home.”

From there, Gloria’s condition spiraled downward. Eventually, the 36-year-old mother of two ended up in an intensive care unit in a coma, diagnosed with autoimmune encephalitis, a serious condition in which Gloria’s immune system was attacking her brain.

Determined to find help for his wife, Gloria’s husband, Emmanuel, brought her to Mayo Clinic’s Florida campus. Although it took time, her Mayo Clinic care team was able to save Gloria and put her on the path to recovery.

“I am grateful for my husband’s persistence,” she says, “and the team of physicians, nurses and others at Mayo Clinic who reunited me with my family.”

Mysterious symptoms

When her symptoms began, Gloria visited a local health care provider near her home in Jacksonville, Florida, who prescribed antibiotics and nasal spray. Getting no relief, Gloria sought help from another clinic and then ended up at a local emergency department.

“They thought I was going deaf, but a few days after those visits, I couldn’t talk. My senses were disappearing,” Gloria says. “A few days later at morning drop-off, I drove home instead of going to work. My husband said I was blabbing words.”

“We needed to accurately pinpoint her condition — and fast — as her health was deteriorating rapidly.” — Sebastian Lopez Chiriboga, M.D.

She was admitted to an area medical center. Her symptoms escalated. Uncontrollable kicking and punching set in. Gloria was given psychotropic medications to help tame her limbs and, for safety, she was strapped to her bed. Additional tests revealed nothing abnormal. Meanwhile, the symptoms worsened, and her doctors didn’t have an answer.

Searching for solutions, Emmanuel decided to take Gloria to Mayo Clinic. His hope was that access to the right diagnostic tools and a medical team experienced in neurologic disorders would help his wife.

At Mayo Clinic, specialists from multiple departments evaluated Gloria. She underwent an MRI of the brain, a PET-CT scan, blood tests and a spinal tap.

“She’s young and didn’t suffer from previous medical conditions,” says Sebastian Lopez Chiriboga, M.D., a neurologist at Mayo Clinic. “We needed to accurately pinpoint her condition — and fast — as her health was deteriorating rapidly.”

Discovering the culprit

Mayo Medical Laboratories is a highly specialized reference laboratory that analyzes tests for clinics and hospitals in the United States and around the world. Its staff includes physicians, scientists, biologists, chemists, microbiologists and geneticists. Through precision testing crucial for detecting neuronal autoantibodies, a team of subspecialists in the Neuroimmunology Laboratory at Mayo Clinic’s Rochester campus made Gloria’s autoimmune encephalitis diagnosis.

“Rare conditions such Mrs. Pena’s underscore the strength of Mayo Clinic as a destination medical center and the importance of integration and excellence.” — William D. Freeman, M.D.

Encephalitis is inflammation of the brain, and there are more than a dozen types of the disease. In Gloria’s case, instead of creating antibodies to combat foreign invaders, such as viruses and bacteria, her body was creating autoantibodies that targeted her own tissue.

Though most encephalitis is caused by a virus or bacteria, scientists at Mayo Medical Laboratories were able to confirm that Gloria did not contract the illness from an infection. How she acquired the condition remains a mystery.

A remarkable recovery

“By the time Gloria arrived at Mayo Clinic, weeks had passed since her initial symptoms of headache and confusion,” Dr. Lopez Chiriboga says. And before she got better, things would get worse.

“During her 32-day stay at Mayo Clinic, she required ICU-level care,” Dr. Lopez Chiriboga says. “Her condition progressed into a catatonic state followed by coma. She was placed on a ventilator and received multi-organ support.”

Gloria’s Mayo Clinic care team focused on doing everything they could to help Gloria and, in time, treatment with aggressive immunotherapy effectively eliminated the inflammation.

“I woke up from a deep sleep learning I had been in two hospitals over six weeks,” Gloria says. Although she doesn’t remember it, during that time her tongue blocked her airway, and a tracheostomy was performed. She fell into a coma, was placed on a ventilator, and had a feeding tube.

“The best advice I can offer after this experience is to not give up on yourself. Listen to your doctors, but be your own advocate and seek a second opinion when necessary.” — Gloria Pena

“We feared the worst, but refused to give up,” Dr. Lopez Chiriboga says.

Through determination, and cognitive and physical therapy, Gloria has made a remarkable recovery.

“It’s humbling to see her perform the same activities that she did before she got sick and live a normal life,” Dr. Lopez Chiriboga says.

“Rare conditions such Mrs. Pena’s underscore the strength of Mayo Clinic as a destination medical center, and the importance of integration and excellence,” says critical care neurologist W. David Freeman, M.D., who was part of her care team. “Her diagnosis, treatment and recovery exemplify our approach to care at Mayo Clinic — to bring together specialists in neurology, critical care and laboratory medicine from across Mayo Clinic to best serve the patient.”

Gloria’s condition improved significantly with each passing month. Now, more than two years later, she is back to caring for her family and living life to its fullest.

“The best advice I can offer after this experience is to not give up on yourself,” Gloria says. “Listen to your doctors, but be your own advocate and seek a second opinion when necessary.”

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