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Old 01-25-2006, 04:42 PM   #1
Join Date: Jun 2005
Posts: 74
pambyboo HB User
Need support

I am so frustrated right now I could scream!! I've been seeing a rheumatologist for the past 1 1/2 years for cross-over between lupus and rheumatoid arthritis. Basically, to make a long story short, for the past ten years I've had +ANA and RA factors (although low titers), miscarriages, "villitis" in pregnancy with two IUGR babies, arthritis, malar rash, neutropenia, mouth ulcers, a DVT, low positive IGM antiphospholipid antibodies- I think that's about it. Anyway, my rheumy wants to start me on methotrexate, and I don't want to start it. So I go to the teaching hospital here, who tells me I just have lupus and APS, and that I don't need to start any other drugs. (I take Plaquenil). I go back to see my rheumy who says they don't know what they are talking about, that I do have RA too and I do need to start the metho. SO- I figure I'll go see the Mayo Clinic. BAD IDEA! I didn't like the doctor. She was very hurried, wouldn't let me speak, basically blew me off. Ended up telling me that I don't have lupus or RA, and I should be happy about that, that what I have at the most is UCTD. (Oh, and that I didn't need to start the methotrexate). She is basing this on the fact that my ANA and RA titers came back negative (great timing- that's only happened one other time in 10 years- I knew I should have gone when I felt crappy). Although my C4 level came back mildly low (for the first time), and my IGM was still a little high. Now, I've had 6 of the 4 defining characteristics of lupus over the past 10 years. I don't understand this crap anymore! I've basically decided that the doctors don't know crap. When I asked her about the 6 characteristics I've had, she just blew me off, and said that I didn't want to have lupus or RA, and I didn't want to be defined as that. WELL DUH! I just want a straight answer and to know what the hell is wrong with me. She told me to look into other areas of my life as the source of my fatigue- because after all "she was tired too". I wanted to slap her.
Guys- do any of your labs go back and forth? Should I accept the UCTD diagnosis? Should I start the methotrexate? (My rheumy wanted to start it because I was still having painful days more often than good ones). I just need someone to listen that understands. I guess I shouldn't have gone looking further than my local rheumy. He is a brilliant man, just hard to pin down for answers- but at least he listens to me.
Any info or help would be appreciated. I'm about at my wits end...about ready to just give up!

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