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Rare neurological disorder may have been sparked by RSV

"Pretty much any viral infection can result in Guillain-Barré. It's just that RSV, boy, that's rare," said Dr. Nicholas Lehnertz, a medical specialist at the Minnesota Department of Health.

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David Henke holding his daughter, Norah. David was recently diagnosed with Guillain-Barré syndrome, a rare neurological disorder.
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One morning in late October, David Henke woke up and his hands weren’t working the way they should be.

“I couldn't hold a spoon correctly, was unable to button a shirt, unable to turn a key in a lock, kind of all of these smaller movements with your hands that you really take for granted. I suddenly wasn't able to do it; it was literally an overnight thing,” he said.

For the past few weeks, his family had been dealing with a wave of RSV, a common respiratory illness. His 6-month-old daughter, Norah, caught the virus at day care, then passed it on to him and his wife, Leah. While the RSV was worrying, Norah recovered with a relatively mild case. And David and Leah were on the mend, too.

That is, except for a tingling that David felt in his hands and feet. At first, he disregarded it, but then his hands weren’t working. And the feeling was starting to creep into other parts of his body.

It was the first symptom of Guillain-Barré syndrome, a neurological disorder that causes your immune system to attack your nerves.

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“It's essentially an autoimmune attack on the peripheral nervous system,” said Dr. Jetter Robertson, a neurologist at M Health Fairview, where Henke also works. “The way it behaves is usually with a progressive course of weakness, oftentimes associated with sensory symptoms, but weakness tends to be the predominant component.”

That weakness, or paralysis, often comes on and ascends, starting at the legs and going up, but can start and progress anywhere, Robertson said. It may also vary in severity.

“There's a very wide spectrum of disease, from people with relatively mild courses that have mostly sensory symptoms without a lot of weakness — are able to walk and continue working with some additional assistance — to very, very severe,” he said, explaining that as many as a quarter of patients “have to be put on a ventilator during the worst of the disease. And even with all of our maximum medical therapy, there still is a mortality rate in the 5% range.”

While the exact cause of GBS is unclear, some patients report experiencing an infection in the weeks prior to getting the disorder. Though the connection between the two still isn’t proven, Robertson said one hypothesis is that there’s something on that virus — like an abnormal protein — that, in someone who is susceptible to it, triggers this response.

“Something about that virus looks like the myelin, the sheath that covers your nerves,” he said. “And so, when it goes to attack the virus, your immune system does as it's supposed to do. [Then] all of a sudden, your immune system, which previously did not recognize your nerves as abnormal, now thinks your nerves are still that virus, and now is causing this immune attack.”

Once David started feeling the weakness spreading, the Henkes decided it was time to go to the hospital. He spent several days in the University of Minnesota Medical Center, and after copious testing, doctors confirmed it was GBS. Henke got treatment of immunoglobulin and began occupational therapy to address the symptoms.

While his case was fairly mild, and stayed in his hands and feet, the effects were still challenging, like when he tried to dress Norah.

At times, he was concerned if he could hold her safely. “Do I trust my hands enough to hold my daughter? Like, if she moves suddenly or jerks back and forth — which little kids can do a lot — will I have the reflexes and the strength in my hands to hold her and not let her fall?”

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Henke is back home now, and says that after a few weeks more of occupational therapy, he should, hopefully, be able to regain his strength and movement.

While the syndrome itself is exceedingly rare — only about 1 in 100,000 people get it each year — experts say the potential of it being triggered by RSV is even rarer.

“Pretty much any viral infection can result in Guillain-Barré. It's just that RSV, boy, that's rare. That's a real rare one,” said Dr. Nicholas Lehnertz, a medical specialist at the Minnesota Department of Health. “But we see [GBS in] other ones, as well. We see it in influenza, we see it in SARS-CoV-2. It's been reported with other things, such as Zika virus, and things like that.”

Lehnertz recommends that if you are concerned, make sure you’re up to date on influenza and COVID-19 booster shots, which can protect against long-term effects.

In the end, Henke said, if RSV did cause the syndrome, he’s glad he’s the one who got it and not his daughter.

“I'd rather be the one who got the bad stuff. And Norah, she doesn't deserve that and doesn't need to experience that.”

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