Treatment helps clear the fog of autoimmune disorder
Denise Krivach was settling into retired life and preparing to build a house in Montana when she began to not feel like herself.
“I was in a sort of fog,” said Krivach, a former Abbott Northwestern radiologist.
Her condition worsened rapidly, and day-to-day living became difficult.
“I couldn’t find my socks — I couldn’t find anything,” she said.
Reading became difficult and, eventually, impossible. Living alone in Montana, Krivach describes books as her “friends,” and losing the ability to read was distressing.
“I felt a little bit lonely because I didn’t have my friends,” she said.
She knew she was in no condition to begin work on her dream home. She sought treatment and answers. Doctors in Montana told her she was experiencing early onset dementia. At one point, she was treated for hives.
Krivach didn’t accept the broad, untreatable prognosis.
“I didn’t think it fit well,” she said. “But I couldn’t express it because I was having problems with my cognition.”
Although Krivach lost much of her ability to focus, her somewhat obsessive nature kept her mind focused enough to seek answers.
“‘This isn’t me,’ that’s what I kept saying — ‘this isn’t me,’” she said. “The only thought I could hold onto was, ‘there’s something wrong, and I have to get this fixed.’”
At the recommendation of a friend, whose mother experienced similar symptoms, Krivach contacted Mayo Clinic for a consultation. Before that consultation occurred, a physical symptom hinted at her condition — a minor stroke. Her doctors in Montana were still puzzled, but specialists at Mayo identified her condition.
Krivach’s brain was under attack — by her own immune system. The swelling it caused blocked a blood vessel in her head, causing the stroke. For Krivach, it was a frightening turn of events, but it offered her a path toward treatment and recovery. Her hives were also a symptom of her immune system going awry.
The concept of a person’t immune system attacking their neurological systems is a relatively new one and is one of medicine’s rapidly developing frontiers.
“Every level of the nervous system can be affected by autoimmune disease,” said Dr. Andrew McKeon, a Mayo Clinic neurologist who helped treat Krivach.
Krivach does not fault her doctors in Montana for failing to accurately diagnose her.
“They just didn’t have the experience,” Krivach said.
“At the milder end of the spectrum, it can be hard to diagnose,” McKeon said. “Sometimes a patient has a combination of factors never seen before.”
Krivach’s case was initially difficult. Her tests did not come back with autoimmune markers, McKeon said.
“I must say I wasn’t sure what was wrong,” he said, adding he usually encounters patients in more advanced stages of disorders, which can help with a diagnosis.
However, Krivach had shown enough symptoms to indicate an autoimmune disorder, McKeon said.
He credited Krivach’s insightful nature to catching the disorder relatively early. Catching it early gave Krivach a better prognosis for recovery.
Krivach received three rounds of treatment before seeing signs of recovery. She admits she was losing hope as the first two treatments failed.
“I just didn’t want to spend my time just fighting against something,” she said. “I really wanted to enjoy the time I have left.”
McKeon and fellow Mayo neurologist Sean Pittock encouraged her to focus on her treatment instead of waiting for an outcome. Their confidence also gave her faith that a solution would be found.
Krivach still experiences some symptoms, such as trouble finding the right word during a conversation, and she experiences occasional balance issues.
“But I’m so, so, so much better,” she said. “When I first arrived here, I would have difficulty living on my own.”
She hasn’t abandoned her idea of a dream home in Montana.