Update for Quix

I know you have a ton of people seeking your advice and experience and I have been one of them and I just wanted you to know that I have received the results of my second muscle biopsy and I have to go back to the large hospital to begin treatment before I start here with my new neurologist.  I have full body inclusion myositis.  Apparently its a pretty rare muscle disorder and I have been trying to do as much reading as I can and from what I gather there is no known course of treatment and I have to sit back and let things happen as they will happen.  I just wanted to thank you for all the time and energy you devote to everyone on this board.

Thank you!!

[Quixotic1]

Billie, I am so sorry, but now you have a diagnosis.  I don't personally know much about this type of myositis.  It has always been classified with other autoimuune forms of myositis, but it is not very responsive to the therapies that help them.  It does fit in with MCTD, if indeed that was the earlier correct diagnosis.  Full Body Inclusion myositis is associated with the production of monoclonal gammopathies (overproduction of certain antibodies).  In one article I read about 24% will also have another autoimmune disease.

Here is amedical article on it.  Skip the highly scientific paragraphs which are interspersed with paragraphs of readable and useful info.

http://www.emedicine.com/neuro/topic422.htm

I'll find some more articles which are more readable for real people.

You havemy best thoughts, Quix