Rare disease historically misdiagnosed in rural areas

In mid-October of last year, Mikal and Lisa Schwindt were less than a month away from a nightmare that would alter their lives forever.

Mikal was excited with the progress of his exercise regime, watching the pounds shed with each visit to the scale. Then, he started feeling pain in his right heel near the bottom of the foot.

Doctors said it was plantar fasciitis and a pinched nerve, ordering rest and physical therapy. Within hours, the numbness in his right foot began to grow more intense.

On Nov. 16, Lisa awoke to a nightmarish situation, one that still haunts her today.

"I heard a loud bang that woke me up. I ran into the bathroom and found Mike on the floor," Lisa recalled with tears in her eyes. "He said that both of his feet were tingling and he was very fatigued."

She recalled trying to get him to his feet and to the car so they could get to the emergency room.

"He said it felt like a current of electricity was running through his legs. He was crawling around on his hands and knees and couldn't stand. I didn't know what it was, but I was very scared. "

By the time the couple reached the hospital, Mikal had begun losing motor skills in his right arm and hand.

"Whatever it was, we knew it was moving fast," said Mikal. "A rheumatologist in Bismarck came in, took one look at me and ordered admission immediately."

After admission and further testing, Dr. Eugene Benjamin, a neurologist, reached a diagnosis. It was Guillain-Barre syndrome.

The rare syndrome is a rapid-onset peripheral nervous system immune disease which affects one in 100,000 people globally, turning the body's immune system against its own nervous system and impairing the transmission of nerve signals.

"I'd never heard of it before," Mikal explained. "Apparently, neither have most of the doctors in this part of the country."

The symptoms are deceiving and can develop in most patients over a span of a few hours. According to the National Institute of Neurological Disorders and Stroke, the disease has historically been misdiagnosed causing significantly longer recovery time.

"Guillain-Barre affects slightly more men than women and can occur at any age, including during childhood. However, it is most common in adults who are 30 to 50 years of age," said Kathleen Jones, a Guillain-Barre awareness advocate. "The exact cause of Guillain-Barre syndrome is unknown. Most people develop the condition shortly after having a viral or bacterial infection, causing the immune system to attack nerve roots and peripheral nerves."

Owing to the rarity, hospitals have historically misdiagnosed the symptoms leading to conditions deteriorating until eventually it requires intensive care unit admission and placement on respirators.

For Mikal, recovery remains a slow and ongoing process, which is laborious and painful, but he considers himself lucky to have encountered a doctor who knew what the syndrome was.

"All I really want is to go back to work," he said, adding that he was lucky to have a company who has supported him throughout the ordeal. "It's hard to say I'm lucky, but I'm lucky."

Lisa explained how Guillian-Barre affects families and does more than affect a person's motor skills.

"It takes everything from you," she said. "It's emasculating for him to sit here in the house and not be able to do the simplest of things. This disease took away our way of life, our dwindling savings. Our happiness."

Mikal said he wanted people to be aware of this disease, so they can seek the proper medical attention.

"Before I got this, I'd never heard of it. Now, I've heard about no less than four cases in North Dakota in the past 18 months," Mikal said. "People have to know about this, they have to know and recognize the symptoms."

For more information about Guillian-Barre, visit www.gbs-cidp.org .