You are not alone. I just had my long awaited appointment with my second rheumy, and I feel like I fell out of the frying pan into the fire. He also wants to blame everything on my fibro, and claims that the ANA (1:1280 before Plaquenil) could be positive from that alone. My CRP (3-4 times over the top of the range) is meaningless because he prefers to look at the sed rate, and mine is relatively normal. My skin reddening and rashes with sun exposure don't count either, because they would have to be raised and very itchy. Mouth sores would have to be nickle sized and refuse to go away without medicine, and hair loss is inconsequential unless you have quarter sized bald spots. My fatigue, joint and muscle pain, low grade fevers, and on and on.....all fibro.
My first rheumy suspected lupus developing, and dx'd UCTD, but began to doubt (I think) my symptoms because, despite my highly positive ANA, my CRP and sed rate were always normal according to her lab. I began seeing a doctor at the University who identified Celiac disease, and his labs showed CRP consistently through the roof over a 6 month period along with the positive ANA. One of the reasons I decided to move on....
New rheumy didn't want to do any bloodwork, and wanted me to start walking 30 minutes a day. Why didn't he understand that if I could walk 30 min. a day, I probably wouldn't have been sitting in his office? He Rx'd Nortriptyline to help my sleep and pain, and come back in 5 mos. Oh, and keep taking the Plaquenil. Huh? Plaquenil doesn't treat fibro.
I am so frustrated by this....disheartened may be a better word. I waited months to see this doctor, flaring all the while, and it turns out I've only gone deeper into "the woods".
Good luck to everybody looking for a good rheumy.....they seem few and far between. And while I know enough to be very grateful that I don't have nickle sized sores and quarter sized bald spots, or other obvious organ involvement.....it seems that is what is required for a diagnosis. Is that the reason it takes so long? The simmering pot has to finally boil over? Really - I don't care what the heck it is - I just want to feel better and hang on to some sort of normal life.
Sorry to ramble on so.....small problems compared to so many of you....wishing everyone the best.
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins