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...
www.emedicine.com/med/topic3417.htm
Here is the article that I told all of you I would find. It is a synopsis about MCTD written for doctors so is not chatty and is a little difficult and boring. But, if you look under history and physical, the list of symptoms is uncomfortablly familiar. For instance, 66% of us have complaints of esophogeal problems (reflux)! Pulmonry hypertension occurs in 23%. When it says "at presentation' it means the first time the Dr sees you. Cumulative means adding up every complaint at every Drs visit. Read up, (or skim what you understand) and give a shout back about this. To be honest, I didnt have a clue about MCTD until I read this. I still dont understand the explaination about the Lymphocytes an T cells, but the articles I read for the public really didnt tell me what I might be in for. This gave me a clue.
Mary Ann
Here is the article that I told all of you I would find. It is a synopsis about MCTD written for doctors so is not chatty and is a little difficult and boring. But, if you look under history and physical, the list of symptoms is uncomfortablly familiar. For instance, 66% of us have complaints of esophogeal problems (reflux)! Pulmonry hypertension occurs in 23%. When it says "at presentation' it means the first time the Dr sees you. Cumulative means adding up every complaint at every Drs visit. Read up, (or skim what you understand) and give a shout back about this. To be honest, I didnt have a clue about MCTD until I read this. I still dont understand the explaination about the Lymphocytes an T cells, but the articles I read for the public really didnt tell me what I might be in for. This gave me a clue.
Mary Ann
Just kidding. That's all stuff I NEVER heard before. Didn't realize my pericarditis could have led to cardiac tamponade. It was 1977, and they just told me, "Don't worry, everything's probably going to be cool, we're just giving you a lot of prednisone, so call for a nurse if you start hallucinating."
I liked this part: MCTD can enter sustained remission later in the clinical course. Anti-RNP autoantibodies typically become undetectable in patients in remission.
Yeah, baby. Give us some more of THAT!
The part about infection and pulmonary hypertension was a real surprise, too. Infection? What kind? Under what circumstances? Like... a stingray attack?
Thanks, MT, I bookmarked this... and now it's back to the books! Argh, I am so behind for classes tomorrow! Big job interview on Friday, wish me luck...
--Cat
So, for me...of course, the pulmonary hypertension is the scariest. Especially when I read about the anti cardiolipin...that's the one blood test that has consistantly come back positive since I was seventeen.
My oh my...this stuff is so scary. I realize that we can't dwell on it...but it is good information. It was weird to see my list of symptoms and disease processes in black and white.
Oh, Cat...i'm sure the mention of infection is likely pneumonia, or something like that. I'm sure some acquired airborne infection. Stingray attack...that's funny!
Thanks for the link Mary Ann!
Nik:)
I thought our immune systems were overactive. I never seem to get colds-- just MCTD stuff. My upper respiratory problem was in about 2007...
Mary Ann
Well, this article was written by the D.O. who is the study chair of the first clinical trial funded by the National Institutes of Health that focuses on the pathogenisis of LUPUS vs. MCTD. Bingo...he's added a bit, especially about the issues of pericarditis and the HLA (been known since mid to early nineties). Most of the information included is from the original paper by Sharp and colleges. I'm reserved about the statistics of various co-morbid diagnosis, ie, PPHN, Raynauds etc. Some of the co-morbidity is also consistent with other demographic factors like smoking, gender, and lifestyle factors. So, one may possibly conclude that quite a few of these co-morbid dx are environmental and caused by choice of lifestyle. In other words, I do not believe that because I have MCTD that I am doomed to these reported causes of mortality. To an extent these co-morbid diagnosis can be controlled with active participatiion in treatment. The information that is not provided intersts me quite a bit...ie lifestyle choices, excersize and nutritional habits, medication compliance as well as effective follow-up. Not to mention spirituality and prayer.
What do you think?
CrisD
Mary Ann
Peace
CrisD