PDA

View Full Version : New to all of this...



KKG
11-19-2009, 11:09 AM
Hi everyone, I was recently diagnosed with SLE this year by my GP after years and years of no answers and running the threads of elimination that finally reached my facial/chest rash, migrain and positive ANA test from the local walk in clinic.

I have seen a rheumatologist 2x now and she is INSISTING its not LUPUS, even though I am photosensitive (now being called rosacea) and the family history of autoimmune disorders that is just simply staggering.

I can't wait for the rheumatologist to spend another 5 years wrapping her brain around the fact that I do indeed have SLE, actually we believe it is the type with neurological issues and its just plain upsetting that I can't get a handle on this or get any help STILL.

Any suggestions as to how and where I can steer my GP to get this back on track? I am asking for a spinal fluid test since the ANA has only showed once and it was during a flare (try getting that to happen again)...frustrated and worried, tired of the pain and disregard for my health.

I am open to suggestions!

magistramarla
11-19-2009, 08:31 PM
Hi KKG,
Welcome to WHL! You'll find many of us here who have been on the same kind of "diagnosis trek". I have been since April of 2007, when my PCP first noticed high ANAs. I've also been through a rheumy who didn't want to treat me because I "didn't test high enough in anything". I kept on looking, and found a great rheumy. She said that although I only tested mildly positive in 4 AI diseases (lupus, RA, Sjogren's and psoriasis), cumulatively, it was enough to justify treatment. She called it Mixed Connective Tissue Disease.
I'm now taking Plaquenil and Methotrexate, and I'm having some good results.
If you're not pleased with what your rheumy told you, and it just doesn't feel right, keep on looking. Get a second, third, or fourth opinion.
Also, look at some of the threads in this forum. You can pick up a lot of good information here.
Big welcoming hugs,
Marla