6 Years Ago I thought I was a Goner

by Guest Author, Levek

Six years ago, my family doctor was worried by my muscle enzyme count and sent me to the hospital for testing and referred me to a neurologist who decided I should be admitted to the hospital where I was subjected to a lot of testing including a muscle biopsy. After 21 days in the hospital, they told me I probably had Inclusion Body Myositis. That wasn’t good news. The dermatologist had ruled out Dermatomyositis. My neurologist wasn’t convinced that it was IBM, so she reviewed the results of the biopsy with the pathologist. She told me that she was convinced that it was Polymyositis and not IBM. I then started the standard protocol, but my CK count was still pretty high and wouldn’t go down. I had lost 30 pounds of muscle in a month. I could not lift my legs, I could not rise from the toilet seat, I would trip and fall, I had to have ramps installed in my house to help me get up and down the stairs. I had to change my car from standard to automatic. If things didn’t improve, I was on the road to a wheelchair. My rheumatologist decided to try immunoglobulin (IVIG). I received six sessions of immunoglobulin lasting  four to six hours each time.

If you have have Myositis, do not give up hope, says guest author, Levek Click to Tweet

Things started to get better and all the while I was on a rebuilding program for my muscles. It took a full year to find the solution. Now, with daily exercise, I  estimate that I recovered 70% of my capacities. PM cannot be cured and I must inject methotrexate weekly to maintain my system. My CKs are a bit high, but stable. My rheumatologist is satisfied with my condition and has suggested a yearly appointment instead of every three months. She follows the regular blood testing for liver and kidney problems associated with this medication.

Some special blood testing determined that my PM was probably caused by statins on genetic predisposition.

I am now living a quasi-normal. happy life. If you suffer from Myositis, don’t lose hope.





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