An 'episode at work' is how Robyn Cook describes the sudden and life-changing full-body spasm that sent her to the emergency room, five years before a mysterious set of symptoms would be diagnosed as stiff person syndrome.
An "episode at work" is how Robyn Cook describes the sudden and life-changing full-body spasm that sent her to the emergency room, five years before a mysterious set of symptoms would be diagnosed as stiff person syndrome.
"These episodes kept happening where it's like, 'Oh, my back went out. I'm stuck. I can't move. I'm hitting the floor and crawling back to bed. But nobody could say anything was wrong with me." After a year of treatment that included intravenous ketamine and Botox injections to help manage muscle spasms, the physiatrist considered the possibility of a rare disease that involved her brain and immune system.
Cook said her stem cell transplant involved an extremely challenging recovery but has "given me my life back." Atkins, a stem cell transplant physician, said he does not know of any neurologist in Canada who specializes in stiff person syndrome. The transplant procedure is reserved for "the very few people who have severe enough symptoms and no response to other treatments."
The patients included a woman treated in 2009, five years after being diagnosed at age 48, and another who had it in 2011 following her diagnosis three years earlier at age 30. Dr. Marinos Dalakas, director of the neuromuscular division at Thomas Jefferson University in Philadelphia, said he has been studying stiff person syndrome for about 30 years and currently has nearly 100 patients, some from other countries, including Canada.
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