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Thread: SYMPOMS AND NEED HELP ON QUESTION

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  1. #1
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    Default SYMPOMS AND NEED HELP ON QUESTION

    I'm sure you're all familiar with this. For those who have Mixed Connective Tissue, see if you know this answer.

    I have CFS but the Rheumy who I had went to about 5 times told me he doesn't really know anything about CFS but doesn't believe I have it.

    On the very first visit he was so sure I had Lupus. He ran the tests and they came back all negative. I know they can take up to 10 years to get any results.

    Then later on he said I know what you have--MCTD. He's so sure. Well for MCTD the sed rate is up around 30 and mine has always been low--around 7. Then the RNP is very high around 80 and my labwork shows no trace.

    Well, I went to my CFS specialist and right off the bat he noticed them two lab results. That's when he shared with me that I don't have MCTD. I looked it up on the website and both tests you show high.

    Has anyone experienced this?

    CindyLou

  2. #2
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    ...sigh... don't you just HATE it?

    "he doesn't know anything about CFS but doesn't believe I have it." HELLO - if he doesn't know anything about it how does he know you don't have it? I'll bet you wanted to shake him. I know that's how I would have felt. I've been known to take information to my doc - things I've learned online or in a reputable journal. Might want to try that, educate him a bit so that he understands where you're at.

    I don't have MCTD so am not aware of the symptoms. Hopefully Saysusie or one of the others will chime in with some helful data.

    Many hugs - hang in there dear!

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