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Negaunee man’s rare disorder provides national exposure

‘Mystery Diagnosis’ television program runs segment this month

June 21, 2011
By CHRISTOPHER DIEM - Journal Staff Writer (cdiem@miningjournal.net) , The Mining Journal

MARQUETTE - No one could explain what was happening to Ryan Gleason.

A day after feeling tired and dizzy while going to work, Gleason, a Negaunee resident, went to the Bell Hospital emergency room on Aug. 21, 2010 with double vision, and numbness in his hands and feet, and was off balance when he tried to move. While at the hospital, his speech became garbled, caused by what he later learned was a paralyzed palate. By Aug. 30, he had no reflexes in his arms or legs.

Gleason said doctors initially thought the speech issue and double vision were a result of pressure from a severe sinus infection and put him on antibiotics and steroids.

Article Photos

Ryan Gleason is pictured in the hospital with one eye closed. His disorder caused double vision when he had both eyes open so he had to close one eye to see normally. (Ryan Gleason photo)

As all of this was going on Gleason's wife, Annette, was pregnant with the couple's fourth child. Due to Ryan's loss of balance and vision problems, she had to push him in a wheelchair and help him shower, get dressed and do many other everyday tasks.

"My body was slowly getting paralyzed each day," he said.

Having no clear answers for what was happening to him, and on the advice of Dr. Randy Folker, a local otolaryngologist, he decided to go to the Mayo Clinic in Minnesota.

While at Mayo, he was seen by several otolaryngologists, two ophthalmologists, a physical therapist and a neurologist. He underwent several vision tests and received an electromyography test, two CT scans, an MRI and a lumbar puncture.

Finally, two weeks after his symptoms started, Ryan Gleason knew what was happening to him. Dr. Margherita Milone diagnosed him with Miller Fisher Syndrome, an autoimmune disorder and a rare variant of Guillain Barre. It starts when a person is suffering from something like a severe sinus infection or an upper respiratory infection and the body is so overworked that the antibodies that are supposed to kill the bacteria begin attacking a person's nerves as well.

"Even though I did not have much information on Miller-Fisher Syndrome, it was comforting to know I was able to begin the journey of recovery for my symptoms," he said. "I had some fear of what to expect from this diagnosis and the way to treat it. After Dr. Milone explained the disorder to me and its treatment I finally felt at peace."

He was treated with intravenous immunoglobulin for four to five hours a day for five days. His expected recovery time was anywhere from four to six months. After a couple of treatments most of the numbness in his hands and feet disappeared, his speech was back to normal and his muscle strength slowly returned. His double vision lasted about 11 weeks.

"I also experienced a few weeks of distorted vision where I could tell my vision was trying to correct itself," he said.

After his diagnosis, Gleason wrote about the disorder on his Facebook page and one of his wife's friends told him he should submit his story to "Mystery Diagnosis," a television show on the Oprah Winfrey Network. Producers of the show contacted him several months later.

His episode aired in June and he said he was pleased with how it turned out. A short clip of the episode can be seen at www.oprah.com/own-mystery-diagnosis/mystery-diagnosis.html.

"Our producer and cameraman did a wonderful job telling my story. The fact my wife was very pregnant helped to add to the story. If you had a chance to watch the show, you may have seen several scenes from Negaunee and Marquette. In addition, local 'actors' performed as extras and photos taken by local artists Daniele Carol and John Wallace were used," Ryan Gleason said.

He said the show's producer was extremely friendly and still keeps in touch.

Gleason said he couldn't have gone through the ordeal without the support of his friends and family, especially Annette, who didn't leave his side until a diagnosis was reached.

"My mother, Kay, traveled with us for our first trip to Mayo Clinic. Even though this was a stressful time for her, she stayed positive and offered to help out any way she could. In addition, I was extremely thankful for my in-laws as they took care of our three boys while we were traveling," he said.

In addition to emotional support, family members also helped out financially while Ryan Gleason was on disability for his illness.

Today, Gleason's life is back to normal. His fourth child, Bryant, was born in November. Miller Fisher Syndrome is not genetic so there's no chance it will be passed on to his children, he said.

"A lot of people are coming up to me and saying they watched my episode on 'Mystery Diagnosis.' Some got emotional when they saw what I went through," he said.

Christopher Diem can be reached at 906-228-2500, ext. 242.

 
 

 

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