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?
...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!