When Greg Widseth’s neighbor found him on a March morning in 2014, Widseth was sitting in his car, staring blankly out the window. He had driven right past his own driveway and was blocking traffic in the Crookston, Minnesota, neighborhood where he lives with his wife Nan and their two boys.
“Everything okay, Greg?” asked the neighbor, who had stepped out of his own car to find out what was wrong. “Where’s Nan?”
Widseth blankly looked up at his neighbor, and asked, “Who’s Nan?”
Lost Moments and Missing Pieces
Widseth, 48, has no memory of that day’s events, which landed him in the hospital where he began having regular seizures. Nor can the Polk County attorney recall much of anything from those next few weeks, during which he was diagnosed with temporal lobe epilepsy and placed on drugs that—unbeknownst to his doctors—would do nothing to stop the episodes.
Nan’s memory of that time, however, is as clear as Greg’s is hazy. A former ER nurse, she recalls trying to comfort the confused and agitated patient who only vaguely resembled her husband, wondering if this would be their family’s new normal.
“When he had this seizure, it felt like I had a different husband,” she says. “It was very scary. It was like that—our life changed.”
A Rare Condition in Disguise
Widseth suffers from autoimmune encephalitis, a rare condition that tells his immune system to attack his brain cells, causing swelling that can lead to as many as 60 seizures a day. The condition is commonly misdiagnosed as epilepsy, a neurological disorder. As a result, patients often get treated with anti-seizure medications incapable of offering relief.
Nan was uncomfortable with Greg’s diagnosis from the very beginning. “I always felt there was something the doctors weren’t asking,” she says.
So when three different drugs failed to calm the seizures after several weeks, Nan snapped into sleuth mode, reaching out to her sister’s neighbor, Jeffrey Britton, M.D., a neurologist who worked at Mayo Clinic in Rochester.
“I had to fight for what I felt was better care,” she says. “I knew we had to be at Mayo.”
Unraveling the Mystery, One Test at a Time
Dr. Britton, a consultant with Mayo Clinic since 1993, specializes in autoimmune encephalitis. During a phone conversation, he asked Nan whether Greg had a history of autoimmune disease. In fact, Widseth had been recently diagnosed with eosinophilic esophagitis, an allergic inflammatory condition.
It was all the evidence Dr. Britton needed. He told Nan to get Greg to Mayo immediately. “He was having a number of symptoms that we correlate with a syndrome called limbic encephalitis,” says Dr. Britton.
“When [Dr. Britton] started that line of questioning, I knew . . . this is what I was looking for,” says Nan. “That conversation gave me so much hope that I could get my husband back.”
The Widseths arrived at Mayo Clinic three days later to a full schedule mapped out by Dr. Britton who sent Greg to the EEG monitoring unit.
“That allowed us to record an EEG during his actual seizures,” explains Dr. Britton, “to help us confirm that they were seizures and to localize them to whichever part of the limbic system they were arising from.”
Dr. Britton and his colleague Andrew McKeon, M.B., B.Ch., M.D., Co-Director of the Neuroimmunology Clinic at Mayo, ordered special blood and spinal fluid tests developed by Mayo Medical Laboratories, along with MRIs and CT and PET scans.
“The whole thing was a well-oiled machine,” Nan remembers. “Dr. Britton knew exactly where he wanted to go with the testing and treatment. And he kept us involved in the process. I felt like everybody really cared. Getting to Mayo was the best thing we could have done.”