Wednesday, June 23, 2010

The wheels turn slowly

Yes, I have a diagnosis, of sorts - inflammatory myositis...possibly polymyositis but I am still in limbo land. The prednisone - 1st line drug in myositis and many other autoimmune conditions - did not work according to my rheumatologist. I'm not sure if I agree as the large muscle mass above my right knee has miraclously disappeared after years. The rheumy did not know this and she went by CPK and muscle strength and muscle pain which had not changed enough.
(The prednisone had side effects even after 2 weeks - my eyes were a bit blurred and dry, I could not get to sleep for hours, I was very hungry all the time and on the last few days my hair seemed to be falling out more than normal)

So what did she recommend? Pain medication, which I have been living on for years and physiotherapy. My problem is I still cannot get into physiotherapy at my local hospital and I am still on the waiting list. This is very frustrating to me as after having a muscle biopsy and being given a diagnosis I am still not doing a thing different than before my diagnosis. Well I suppose I am doing one thing which is to learn a bit about Myositis and contacting others who have it. Please comment here if you do also have one of the forms of Myositis as I would love to hear from you.