Posted 23 September 2007 - 11:52 AM
from what I've found out, it's really rare. I read that only 2% of pts with systemic sclerosis have it, though it's prescence can be pretty specific for it. I also read that it can be associated with certain malignancies. I'm not worried about that.
i'm just curious to know if anyone of you have tested positive for it? in combination with the nucleolar pattern I'm wondering what I'm dealing with. I'mseeing my new rheumatologist for the first time this wednesday, because I feel that my old one kept me way too in the dark. she referred to me as uctd for a year, then to mctd, even with negative rnp. she never even once mentioned the possibility of scleroderma evolving. as my fingers turn purple and burn in response to cold and stress for two years now, I can't help but to wonder why, lol. I often wondered why she called it undifferentiated/mixed...she brought up lupus...but what else? mixed with what else? it made me nuts, but I couldn't come right out and ask her for some reason. I figured if she didn't offer the info, then I guess I didn't need to know.
anyway, thanks for letting me vent. please let me know if anyone ahs info on this stuff.
Posted 23 September 2007 - 09:40 PM
UCTD (undifferentiated connective tissue disease) and MCTD (mixed connective tissue disease) are very real diagnoses for a set of conditions which do not rule out scleroderma. The two links I have given you include some very specific information in charts. You say, "I couldn't come right out and ask her for some reason. I figured if she didn't offer the info, then I guess I didn't need to know."
When a doctor tells you something and you do not ask questions about it, they are likely to assume that you have understood. If you do not understand, ask questions. Ask the specific thing that is going through your mind at the time: Mixed with what? Your time with the doctor is for dialogue. You should be talking to each other. You DO need to know and you have the right to have it explained to you.
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Posted 24 September 2007 - 02:42 AM
I found the same thing you did about the midbody pattern - that it is found predominantly in SSc, but only about 2% of SSc patients have it. I don't know if I was ever tested for it so I don't know about mine. My rheumatologist doesn't rely a whole lot on antibody testing. He's always told me that the fact that my ANA was high was enough to know there was a problem. He primarily uses my symptoms and how I feel as to how my disease is or isn't progressing.
I have MCTD (scleroderma and polymyositis (PM)). As you'll see from Jefa's links that MCTD can be a combination of sclero, lupus, RA, PM, and DM. Sjogren's syndrome and Raynaud's are very common in MCTD neither of which is caused by just one disease such as sclero. Raynaud's exist in about 95% of sclero and about 1/3 of lupus patients, that's probably why the rheumatologist brought up Lupus as a possibility. Scleroderma is a very difficult disease to diagnose. Skin hardening is probably the most unique feature, but then some of us don't have a lot of that. When I first went in, it was only my fingers and hands, and now it's no where.
It very important that you keep a journal of all your symptoms (where or not you think they are disease related). Take the journal with you every time you see a doctor. If you're an information fanatic like some us, do your homework (yes - I use to teach. ) Write down questions before you go. Sometimes we forget when we're there. And please - take Jefa's advice - if you don't understand what the doctor says, ask for clarification. You're paying for the visit, so you have to right to understand what you are ore aren't being told. Also, if you don't like your current doctor - get another one!
Please let us know how you are doing and if you get anymore information.
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