I don’t wish this disease on anyone but it helps to hear that others bodies does the same stuff as mine! My last appointment, in tears I asked my rheumy if he was sure this was my diagnosis? I have 11/12 criteria and every serious diagnosis that lupus causes but my antibodies stayed borderline or negative! When I finally got to my rheumy, 25 years after the first symptoms- he started treating me! I’ve been on chemo, plaquenil and prednisone now! I continue to have symptoms and horrible flairs but in a year- I’m now not bedridden! I’m 100% better! For myself though, I wanted the blood work to prove it to me! My sed rate will be only 2 points above normal yet my heart is inflamed, lungs, uterus and kidney along with red hot visibly swollen knees or ankles??? What the heck? My rheumy kept asking why I was so worried about the lab work and said," let me worry about it!" I said, I don’t want to take this kinds of meds if I don’t need them? He answered, " are they helping?" I said, " majorly!" He kept saying," ok- what’s the question?" He was being kind but I don’t think he understands that the normal population of doctors don’t take you serious unless you have the labs? He kept saying, " be patient!" I left his office this past month and frustrated with new medications needing added, I had the same ole lab work that frustrates me! Everyone asking if I tested positive yet! I broke down and cried with frustration! I guess it scared me so much to be on " chemo" type drugs- steroids etc!
Five days later, rheumy called to explain my sle lupus was now active and he was going to double my medications and add daily steroids etc! My Ana, anti- ds DNA elevated high and two different antiphospholipids! My sed rate in a active lupus again and I feel horrible is now still barely elevated! My lab work has never correlated with my disease! I feel horrible right now but I can honestly say- I’ve felt much worse with negative lab work??? Having the disease sucks but the mind games it plays- is overwhelming!