| Web: | mayocliniclabs.com |
|---|---|
| Email: | mcl@mayo.edu |
| Telephone: | 800-533-1710 |
| International: | +1 855-379-3115 |
| Values are valid only on day of printing | |
| Web: | mayocliniclabs.com |
|---|---|
| Email: | mcl@mayo.edu |
| Telephone: | 800-533-1710 |
| International: | +1 855-379-3115 |
| Values are valid only on day of printing | |
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?”
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.”
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.”
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.”
The test results confirmed what Dr. Britton already suspected: Widseth’s immune system produces antibodies that target his brain cells. It wasn’t epilepsy at all. He was on the wrong type of medication.
“When a patient has failed two or three of the anti-epilepsy medications, then it’s considered medically refractory epilepsy,” explains Sean Pittock, M.D., also a Co-Director of the Neuroimmunology Laboratory. “We’ve found that when we give immunotherapy to patients with these neural antibodies, many of them will have . . . complete resolution of their seizure disorder.”
Vanda Lennon, M.D., Ph.D., established the Neuroimmunology Laboratory at the Mayo Clinic in the late 1970s. Dr. Lennon had been critical in developing testing for a common autoimmune neurological disorder called myasthenia gravis.
“There’s been a longstanding relationship between the lab and the Neurology Department as a whole,” says Dr. Pittock. “They’re the experts in identifying the antibody. We’re the experts in dissecting out the clinical manifestations of the condition. Through those dual efforts, you can come up with certain patterns of clinical presentations that typically occur with certain antibodies they’ve discovered.”
Evaluations from Mayo Medical Laboratories, the reference laboratory of Mayo Clinic, incorporate all the antibodies pertinent to autoimmune epilepsy, making these tests a comprehensive overview of the epilepsy pertinent antibodies.
“Those antibodies are really helpful in two ways,” Dr. Pittock continues. “They can help us confirm that the patient’s neurological manifestations are due to an autoimmune condition. They can also help us in terms of the hunt or search for a specific underlying malignancy depending on the profile of the antibodies that we discover.”
If left untreated, autoimmune encephalitis can wreak havoc on a patient’s memory, personality, and emotional stability.
“People end up in comas,” says Greg. “People end up dying from this.”
As Dr. Pittock indicates, the condition is completely reversible with the right treatment. But, only if it’s caught early enough. And for now, not enough health care professionals have it on their radar.
“Even the neurologists I used to work with had never heard of it,” says Nan. “Greg might be one of the first patients they’ve seen with the condition. So they probably wouldn’t have known to send the blood work to Mayo for testing.”
Vanda Lennon, M.D., Ph.D., established the Neuroimmunology Laboratory at the Mayo Clinic in the late 1960s. At the time, the lab was critical in developing testing for a common autoimmune neurological disorder called myasthenia gravis.
“There’s been a longstanding relationship between the lab and the Neurology Department as a whole,” says Dr. Pittock. “They’re the experts in identifying the antibody. We’re the experts in dissecting out the clinical manifestations of the condition. Through those dual efforts, you can come up with certain patterns of clinical presentations that typically occur with certain antibodies they’ve discovered.”
Evaluations from Mayo Medical Laboratories, the reference laboratory of Mayo Clinic, incorporate all the antibodies pertinent to autoimmune epilepsy, making these tests a comprehensive overview of the epilepsy pertinent antibodies.
“Those antibodies are really helpful in two ways,” Dr. Pittock continues. “They can help us confirm that the patient’s neurological manifestations are due to an autoimmune condition. They can also help us in terms of the hunt or search for a specific underlying malignancy depending on the profile of the antibodies that we discover.”
The Widseths are grateful they knew where to turn. And that the Mayo Clinic care model allowed them to play a meaningful role in the treatment process.
“All the Mayo doctors sit down and discuss your treatment with you,” says Greg. “And your opinion matters. For example, Nan asked Dr. Britton about discontinuing a particular medication because of its side effects. He said, ‘Yes, I think we could do that.’ They listen, and they make determinations that take your feelings into account. That team approach is really important.”
“They include the patient as part of the team,” Nan adds. “That doesn’t happen a lot. Actually being a part of the team and the decision-making was wonderful.”
Today, Greg and Nan keep a close eye on Greg’s condition, and Greg has switched to immunotherapy. They still travel to Mayo for checkups, but Greg has already passed the one-year risk window for relapse . . . seizure-free.
Greg credits Nan’s courage to trust her own instincts as a big reason why his condition is under control today. His advice to other patients is to speak up.
“If you have concerns about what you’re being told, you need to ask questions,” he says. “You need to be that advocate for yourself.”
“Patients need to arm themselves with knowledge,” Nan agrees. “If you do your homework and have a physician willing to listen, you can work so well together. It’s got to be a partnership.”
