DICKINSON, N.D. — It had been nearly two years since Mikal Schwindt was diagnosed with the rare neurological disorder known as Guillain-Barré syndrome. He was recovering well until blisters on his feet led to another rare diagnosis.
Guillain-Barré is a disorder in which the body's immune system attacks its peripheral nervous system. It occurs in just one out of every 100,000 people per year. Mikal's first diagnosis in 2017 started with pain in his right heel, followed by extreme numbness and fatigue.
Mikal still wears ankle braces to support his feet. He still feels tingling and still has trouble with his fine motor skills.
"This hand still doesn’t totally work. I don’t know if it’s ever going to come back. Both feet … I can’t lift them. I still have numbness in my feet. People think because they see you walking around that it’s all gone. It’s not gone. There’s a lot of things I can’t do with this hand ... They tingle and they hurt all the time. People ask me ‘Are you in any pain?’ and I just tell them ‘No’ because I’m so used to it already," he said.
He still gets fatigued easily, too, but his wife Lisa said he was making good progress.
"He was also working with a therapist twice a week. He was going to the gym five days a week, so he was getting his strength and developing his endurance," she said.
In April 2018, Mikal discovered he had an infected ulcer on his foot that had went through to the bone. He hadn't known the ulcer was there for awhile because of the numbness in his feet from the Guillain-Barré.
"That set me back three months, because I couldn’t weight bear on this foot for three months, so I couldn’t do anything. I couldn’t go to the gym. I couldn’t really exercise," he said.
Then in February, Mikal started to get sick again. This time, he had cold symptoms that lingered for months. He started feeling weak again, and his vision was abnormal. He went to the doctor several times, but they told him he had a viral infection and that it would get better on its own. In May, when she noticed what looked like bruises on his feet, Lisa took him to the emergency room at CHI St. Alexius Dickinson.
"When I finally took him in May, he got a spot on the bottom of his right foot, and I thought he stepped on something and bruised it," she said. "The next day he got up and his left foot had tiny little purple spots … Each day he’d get a couple tiny little spots. They were like a pinhole, the end of a pen, tiny little dots. But then pain started, and by now he’s really fatigued. He’s barely able to take a shower and going back to bed, sleeping a lot, appetite’s gone."
In the ER, the doctor ordered blood tests and chest X-rays.
"He came back in and he said ‘Son, your kidneys look like you’re in kidney failure. Your lungs look like you’re full of pneumonia, but you don’t have pneumonia. I’m thinking, without more tests, you have Wegener's disease. You need specialists to confirm this,'" Lisa recalled.
Mikal was transferred to CHI St. Alexius Health Bismarck to see a rheumatologist who diagnosed him with granulomatosis with polyangiitis, formerly called Wegener's.
Lisa remembered hearing the rheumatologist's diagnosis, "She came in and she said, ‘I want to tell you something. When he came into the ER room and he was in the hospital for the Guillain-Barré, the markers were there for the Wegener's disease, but because the prominent forefront was the Guillain-Barré, it was masking the Wegener's. When they treated him for the Guillain-Barré, they treated the Wegener's disease … However, the problem is Wegener's needs continued treatment … and he didn’t get it.’
Granulomatosis with polyangiitis is also an autoimmune disorder characterized by the inflammation of blood vessels that results in damage to various organs, often the kidneys. Because it often goes undiagnosed, estimates of its occurrence vary greatly.
In June, Mikal noticed problems with his foot again. It was purple and had swelled to three times its normal size.
"The toes were dead. They were black," Lisa said, likening them to toes with frostbite.
They had to be amputated to just past the base of the toes, or he would risk gangrene or a septic blood infection.
"It’s hard to think about. I can’t look at it when I take the sock off. She does the bandages. It bothers me to look at it. I hate it, but I’ve got to get adjusted to it. It’ll take some time," Mikal said.
Life has become difficult for Mikal and Lisa. Mikal, once active, is now often confined to his mother's former house in Dickinson, where they moved from Hazen to be closer to the hospital.
"I don’t do anything, sit in a chair and watch TV," he said. "It puts so much on her when I want to go somewhere. I have to use … one of those little scooters. She’s got to load everything. I just go sit in the vehicle because I can’t do anything. It’s frustrating … It puts a lot on her too because she’s got to do everything … After awhile you kind of feel guilty. You feel like you’re burdening people, asking for help all the time, so there’s a lot of times I just don’t say anything because I can go without it. I know she’d do it, but that’s not the point."
Lisa said she hopes to get him out of the house more soon and is looking forward to football season, when they can watch the NFL and Dickinson Trinity games.
Mikal is recovering, and there is a possibility he will go into remission. In the meantime, the medications, treatments, medical equipment and frequent trips to Bismarck are very expensive. His family have set up a fundraiser on Facebook to pay for their expenses.