Hey Kathy,
I actually have finally found a doc who thinks this is lupus and is treating me for it. She just wants me to see a rheumy as well. Unlike many here, I have seen many docs who have done all the autoimmune tests, but when my results would come back normal (I have always had a negative ANA), they said it was FMS only, and there was nothing they could do. So, for me, it was a case of them basing EVERYTHING on the negative ANA. Most of my other blood work was out of range, particularly the sed rate and CRP - which are always really high, and alot of the others.
I kind of gave up on docs for a while (I actually went all last summer without almost any symptoms). I got sick again last fall, and was at the ER a few times with pleurisy, unexplained swelling, etc. I started seeing this new doctor - who is wonderful - and without me saying too much about my past medical history, she looked at me and my blood work and said, "This really looks like lupus" I said, "I know, but I have a neg ANA" She said (FINALLY< SOMEONE!) "There are cases of lupus with a negative ANA, its rare, but it does happen." I started to cry with relief.
So, the past few months, she has tried steroid tapers, but they havent worked (symptoms kept coming back), so she has me on the striaght Pred and Plaqenil. I was really honest with her and told her my fear about going to another rheumie. I said "What if he says its not lupus and that Im fine?" She said "There is no question anymore that there is an autoimmune process going on. You ARE NOT going to be UN-diagnosed again" Again...cry with relief. :cry:
So, thats more my story - the testing was always done, but with a neg ANA I couldnt get treated.
I live in Boston, and there really are some of the best rheumatologists in the world here. Brigham and Womens Hosp actually, supposedly just came out with some breakthrough about lupus - it was in the paper apparently, but I havent seen it yet.
So my hope is, from here, is that I will continue to be treated (d'ah - the meds are working) and not told - Oopps, we made a mistake. ops:
Like you, I dont live in the past anymore either. In recovery, Ive learned to keep it in the day - yesterdays gone, tomorrow may never come. Enjoy each moment, stay grateful and help others. I try to live by that!!
Thanks for the encouragement, Kathy. Ithink we should start some sort of coalition to change the diagnostic process. Up for it?? lol
Have a great day!!
Love and prayers -