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Muscular Dystrophy Message Board

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[QUOTE=peachiemom;3808917]Casino gal
With Miyoshi Miopathy, they can tell if you have it if your CK level in your blood is elevated. Elevated CK is a signature trait for certain types of MD that can be diagnosed with a simple blood draw. Do NOT fall for the "we need to see the muscle tissue to look for vaccules" line that I did 15 years ago. My Drs. really wanted a sample to send to Dr. Brown so they told me they NEEDED it. When I didn't want to do it, Dr. Brown himself called and I being young and uneducated about the disease participated in a study for Robert Brown, who is big into MM research. Gave tissue samples (2 inch scar on thigh), blood from me and all my family, etc. When I kept calling to see if the study was completed I got utterly blown off. I could not even get a copy of the study sent to me.

Jodie, I'm sorry you had such a negative experience with your biopsy. I actually had a very negative experience with my first neurologist. He was an MS expert and could not deal with my MD. However, I finally had a needle biopsy in 2002 and found out lots. We did 5-6 microscopy tests and 7-8 tissue stains. One revealed a non-miyoshi dysferlin deficiency. (It's not LGMD2B either!) Unfortunately, all tests have been negative for the MD's we suspected but it did show cell necrosis and ragged fibers, etc. And my MD doctor sent me every pathology report. I have a thick notebook with every test result.

I read your other posts. Welcome to the board and keep in touch!


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