Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Hi Elaine.... I'm so glad you were able to write and let us know how your doing. Please, don't ever worry about the length of your posts... it has given all of us an update as to what your going through. I must say you have been through a lot. Regarding your Rheumatologist... there's another one we can add to the list of one's NOT to go to. I've never taken Methotrexate (spelling) but I do know that some can take it fine with no problems and others experience many problems. I'm really surprised they put you on that drug with your known lung problems. As for the Prednisone... it can be a nasty drug but when your in pain and can't breath then it's a life saver. We all try our best to either get off the drug or lower it way down... I think you and only you are able to tell how your body feels. If your still in alot of pain then it's good to remain on the higher level. Your body must not be ready for the lower dosage plus they lowered you down to fast.... I got blisters on my chest, back and right arm and I can say I hope I never have them again. Pain was not the word for it. OUCH, OUCH, OUCH....!!!! Your hubby sounds so wonderful. I'm glad you two got to go on your vacation and have some fun before you have to go through this surgery. Keep in touch with us and let us know how your doing. I'll keep you in my prayers for a speedy recovery. Gentle hugs Vicki-PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 I just wanted to tell you that Elaine is my best friend and I invited her to join this group for two reasons. First I wanted her to be here because she wants to learn about my dm. Secondly we think that it is very possible that she has pm or dm that has never been diagnosed properly. She has skin problems and she most definitely has muscle weakness. She was diagnosed with possible RA, but all her blood tests for that have been negative and the doctors have said it is just what they call sero-negative RA. We are not convinced that it is RA. I do believe she has adrenal insufficiency from years of prednisone use, but I also think she has some sort of muscle disorder. She has too much muscle pain, fatigue, and weakness for it to be RA. RA affects the joint more and the joint pain she has seems to be mostly related to her foot that is causing her to use her knee and hip improperly or the pain she has from previous joint surgeries. So I am telling you all this because I value your opinions and input. Since you have now read her medical history and what I have had to say, what do you guys think, should she push the doctors for a more definitive diagnosis? Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Fern, it sure sounds like she has more going on than the doctors are telling her or know. I thought PM right away but you say she has skin problems.... She lives in Chicago... I can't remember what major clinic is there that knows about myositis... do you know? She really needs to go to a clinic that can run her through all the tests to find out what the heck is going on. Seems the doctors she is currently going to haven't a clue and are just trying different things on her. Doctors don't get it when you try to tell them that the pain your feeling is not in a joint but the muscle. Elaine probably has Osteoarthritis.... Well, we'll put our heads together and try to come up with something.... I'm going to bed now... the Olympics were great.. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Starflower produced the following text on 2000/10/01 at 11:17 PM: > So I am telling you all this because I value your opinions > and input. Since you have now read her medical history > and what I have had to say, what do you guys think, should > she push the doctors for a more definitive diagnosis? I was under the impression that an elevated CK is a strong indicator of myositis which doesn't appear in diseases with some similar symptoms. I would imagine that already being on anti-inflammatory medications would complicate the diagnosis considerably. - -- P. Burke .... Sr. Software Developer .... jburke@... Contact info: <http://www.cis.umassd.edu/~jburke/websig.html> " Rest in reason. Move in passion. " - Kahlil Gibran Quote Link to comment Share on other sites More sharing options...
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