MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
This past year I have been diagnosed with so many different things and I would say I have been in hell. The most recent one was chronic fatigue. Things started really going down hill for me and I lost all fight. My doctor sent me to an infectious disease doctor. She didn't believe that it was chronic fatigue and did ask kinds of weird tests just to verify and also rule out any possible infection. She gave me a dose of prednisone. It changed my life. The best I have felt in 7 years. It gave me hope. So now I've been referred to a rheumatologist as they think I have an autoimmune disorder. I've been waiting 3 months to get into a decent one. I went to one and will never go back. He told me he didn't believe me and then asked me if I had my brain checked. I called me a couple choice words and left. Anyways my doctor is thinking maybe mixed connective tissue and I think there is also sjogren syndrom too. My symptoms if I can even remember them all after so many years it becomes a way of life. Awful fatigue, joint pain, stiffness, sores in my mouth (like thrush) constant fever, dry eyes, dry skin, can't get a restful sleep, my feet have started to swell, depression, anxiety, chronic pelvic pain. All my lab work has come back normal. No RA, lupus or anything like that. My sed rate was up just a little bit. Can anyone give me any insight? I go to the rheumatologist on September 17 and I'm hoping they will help. If I have to hear sorry I can't help you one more time I will honestly lose it.
The main tests you want to look at are the antibody tests-- anti-RNP for MCTD, but also double-stranded DNA and the lupus antibody tests. Make sure you get the numerical results, confirm the reference ranges with the lab that did the test, then check the reference range online as well. (Don't mean to sound directive, apologies if you did all that and just can't remember now-- that happens to a lot of us!)
Sed rate sometimes has a very loose correlation with immune disorder symptoms, for me it did when I was younger-- but often the sed rate was normal, so the high sed rate just confused people.
Also, I see that you are 31, and for some of us, the antibody result did not turn positive until we were a bit older, late 30s or mid 40s.
Very hard to be patient. Get plenty of sleep when you can. If they will give you prednisone, see if they will prescribe stretches of low-dose alternate days at 5 or 10 milligrams. I did that for about seven years when fevers were a big issue for me, and when I was a bit younger than you, and it got me through the bad initial blast of the illness-- if this is what it is.
One of the reasons they are careful with steroids is that they don't want to mask symptoms of something else (and the side effects, of course, which you probably know.)
Hope that's some kind of vague help.
We are big on "vague" over here, sometimes!
Mary Ann