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View Full Version : SYMPOMS AND NEED HELP ON QUESTION



CindyLou
10-17-2005, 06:10 AM
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

hatlady
10-17-2005, 03:37 PM
...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!