Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Dear Alice, In 1998, when my hearing started to disappear very quickly (I had first noticed hearing loss weeks after the delivery of my second daughter, in 1978. It was a very difficult delivery--we almost lost her), my endo worked with a rheumatologist. They put me through a course of high-dose chemotherapy, hoping that what I had was vasculitis. My hearing did not improve on that regimen, but I do remember that I felt better overall on it. My endocrinologist still suspects that I might have myositis; I get so much muscle " burning " with repetitive movements, elevated CK levels, and my biopsy showed vacuoles, which Dr. Hirano (Col-Pres) told me at the time was " highly unusual. " In one of the recent MDA Quests, I saw that the only myositis where vacuoles were found is inclusion-body myositis. However, both the endo and I believe that there is much-overlapping among these diseases and also between autoimmune and neuromuscular diseases. I also have Sjogren's Syndrome and the hypothyroidism I have developed and which is worsening, may be autoimmune. Ah, the world of mito.... Take care! Quote Link to comment Share on other sites More sharing options...
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