I have MCTD and since moving to a different state, I've had difficulties finding good doctors. Up until I moved, my disease was manageable. Now, I feel like I'm on a downward slope to demise. In the past year I've had lungs filled with fluid, collapsed lungs, chest tubes, severe edema, high CPK & c-reactive protein levels, and I could go on. My fear is that in the past 1.5 years, I've only had TWO blood tests done..and all they checked were CPK and c-reactive levels. No blood counts, no liver or kidney panels. My old Dr did these every 3 months. Any suggestions? Honestly, I'm not even sure this is the MCTD causing all of these new symptoms.
Autoimmune Disorders - Anyone have Mixed Connective? If so, I'd like to pick your brain :)?
Added 22 Feb 2010:
The problem with the Drs seems to be...apathy? They seriously just don't seem to care or even be concerned. My Dr didn't even visit me in the hospital, just had the on-call Dr take care of me. I just get the feeling none of the Drs I've been to are all that familiar with MCTD. I'm scared :(
solonne, i know its scary when you arent getting the medical help you need there have been quite a few dr that have just shutted me to the side because the mctd i have is so rare that most dont even see a single case in a career. scleroderma is hard to diagnose because it looks like a bunch of things and no one really knows what there looking at unless you get lucky and it shows up on your skin first but the one thing you can count on is your self. if you feel uncomfortable and feel like your not being treated right then you can best believe that something is not right trust your inner self and even if its nnlike bumping your head agianst a wall keep pushing until some one listens. one of the things about scleroderma is the god awful way it attacks the hands. that and my right foot is now going bonkers not to mention leg arm etc you get my drift, any way it effects every one differently inside and out that includes heart kidney etc, theres a foundation that deals with scleroderma if you goodle scleroderma foundation it comes up first, i dont know if you have this type of mctd but even though they deal with scleroderma they might be a helpfull advocate and sourse of knowledge for you because scleroderma is a mctd and the doctors and people on that site are from all over the place and once they hear your story you might be able to gain help in locating a decent dr that will know you need better medical attention and other people with similiar medical conditions, fears, and challanges that will be able to help you threw the difficult steps of the diease. dont give up dont give in and remember you are never really alone reach out people are here. sometimes i have to remember that myself and it helps. diana
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