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POLYMYOSITIS

Posted on May 20 2015

POLYMYOSITIS
Hi, my name is Renee, I am 48 yrs old Respiratory Therapist who worked full time and loved my job. January of 2012 my life was turned up side down. Before that I Snowmobiled, skied, worked out, swam,canoed with all of my friends...pretty much anything one could do I did it!
Then one morning I woke up and felt warm, nauseous, seemed like typical flu systems...only I had difficulty raising my arms, after a week I went to my family doctor who thought it might be something viral, see if it will run its course...three weeks later I still had a low grade fever and couldn't raise my arms and had pain in both hips.
My primary sent me to a slew of specialists, the first seven said things like "try yoga", "see a psychiatrist", finally I found a neurologist who believed me and ran a lot of blood work and a muscle biopsy. I was called in the office two days later to hear the diagnosis, "polymyositis" He tried every treatment recommended by Mayo clinic and was working with a rheumatologist, and have been in the hospital more than Ive been home. Symptoms include, severe pain and weakness in all major muscles, exhaustion 24/7. I use a walker and now I am trying to get disability. Nobody knows how it began, assuming the low grade fever three years ago. I am now called Refractory Polymyositis, since nothing has slowed down the disease process. Hoping to try a bone marrow stem cell transplant before the summer is over.