In April 2018, Frank Lonabaugh was driving when his hand slid down the steering wheel. Odd, he thought. Unusual. And looking back, the first sign of a problem that would lead Frank and his wife, Christine, from their home in Fort Myers, Florida, to Mayo Clinic's Rochester campus. "Mayo Clinic saved Frank's life," Christine says.
That's the happy ending. But to get there, Frank and Christine would travel a long and winding road that began with an appointment with Frank's primary physician. A physical exam and MRI "came back clean," Frank says. But his symptoms began to escalate. He began having small faciobrachial dystonic seizures, during which his mouth would open and close, and his hand would jerk up to his mouth and back down again. Eventually, Frank was having hundreds of these seizures a day. He also started falling, losing his footing with no warning. He was becoming confused and couldn't sleep.
It was a terrifying decline, and no one could tell Frank and Christine why it was happening. In Fort Myers, Frank saw several neurologists and had test after test without a definitive diagnosis. With no answers in Fort Myers, Frank scheduled an appointment at a major medical center two hours away. "The first doctor I saw spent 10 minutes with me and decided I needed blood pressure medication and an anti-depressant," he says. "After that, my falling and seizures got worse."
The couple returned to that medical center a week later, and Frank was admitted to the hospital and finally received a diagnosis: autoimmune encephalitis. His immune system was attacking his brain. Frank began receiving treatment, but made little progress. "He'd get better for a week, then relapse," Christine says. In spite of having a diagnosis and starting treatment, Christine still felt she was losing her husband. So she decided to reach out to Mayo Clinic. "I felt like it was our last chance, our last stop," Christine says.
At Mayo, Frank and Christine found a medical system unlike any they'd experienced before. Frank's first appointment lasted more than two hours and was immediately followed by several tests. "They did this all in the same day," he says. "And they had the results that day. That just doesn't happen."
The tests confirmed the diagnosis Frank had received in Florida. But his medical team at Mayo had a different approach to treatment. Jeffrey Britton, M.D., and Andrew McKeon, M.B., B.Ch., M.D., part of Mayo Clinic's Center for Multiple Sclerosis and Autoimmune Neurology, are leaders in treating autoimmune encephalitis and recognized the need for more aggressive care. Frank was hospitalized for eight days for intense treatment and spent an additional month in Rochester receiving outpatient treatment. "The level of care I received was just a knockout," he says. "Every shift that came on, they studied my chart. They asked questions. They listened to me. They took all the time they needed."
It was just what Frank needed. Today, he no longer experiences seizures or falls. While he has some lingering problems, such as struggling to find the right word in a conversation, he's still receiving treatment and hopes it will eventually eliminate those as well.
For now, Frank and Christine tell us they're grateful for the progress Frank has made. He's been able to return to the life he loves in Florida — a life that includes driving convertibles, watching alligators sun themselves on the lake behind his house, and playing bass. "Now I see why people from all over the world come to Mayo Clinic," Christine says. "It's not just the medical care. Everyone in Rochester was so supportive during our stay. A woman who worked at our hotel took me grocery shopping on her day off. A guitar store stayed open late so Frank could buy a bass. The shuttle drivers and restaurant servers and housekeepers were all so sweet to us."
The only thing the couple would change about their experience is the timing. "I wish we would have come sooner," Christine says. "Mayo gave us a miracle."
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Tags: autoimmune encephalitis, Center for Multiple Sclerosis and Autoimmune Neurology, Dr. Andrew McKeon, Dr. Jeffrey Britton, faciobrachial dystonic seizures, Mayo Clinic in Rochester, Patient Stories