Just got my results from the last batch of testing. ANA is still high @ 1:640 - which at least is down from the last time @ 1280. Sed rate was nl - and no other AI indicators were positive. The only thing off was an elevated RBC and Hematocrit, along with a low MCHC count (which apparently means the hemoglobin inside the RBC's is abnormally "diluted" - called hypochromia - which happens in iron deficiency anemia - go figure.) I am very glad my LE's were normal.
Despite my symptoms...joint pain and stiffness, persistant fatigue, malaise, hair loss, sun sensitivity, numbness in hands and sometimes arms, low grade fever, skin changes, red face, dry eyes and mouth,brain fog, difficulty sleeping, mouth sores, color and temp changes in my right hand, and the fact that I lost 6 lbs. in two weeks (per the doctors scale - which I've not been able to do when I've actually dieted to lose weight, and it isn't like I'm getting any exercise....arghh!) she is telling me it's all "subjective" since the bloodwork is not conclusive beyond the ANA.
This rheumie offered me Plaquenil on my first visit to her 1 1/2 yrs ago when the ANA was still the only marker. I wasn't feeling that bad then and decided to wait. (my bad). She has continued to test me every 6 mos for Sjogren's, Lupus, RA etc. This past May I had been feeling crummy enough long enough to ask for the Plaq when the ANA reached 1:1280. But then the rheumie wanted to wait because my sed rate was nl. (her bad!). So now I'll get the Plaq. But she also is referring me to Cleveland Clinic (because I dissolved into tears of frustration?)
I'm afraid if I start the Plaq and then go to Cleveland Clinic, even the ANA will not be showing up and they'll tell me I'm crazy and we'll have spent all kinds of money (out of network) for that kind of abuse. It's all so unbelievingly frustrating. The rheumie tells me some people come in with that kind of ANA plus AI markers and feel wonderful - no symptoms. But I come in with all the symptoms and nothing shows up in the blood but the ANA....so maybe I'm just "sensitive" (can they arrest you for slapping your rheumie?) I told her what I heard her saying is that there are several possible AI diseases "circling" but she can't say which one is going to land. She said "that is correct." So helpful.
OK - I'm on a rant. Been flaring for 2 weeks - can't even get to the grocery store - and i was sure something would finally show up. AAACCCCCHHHHH! If you're still reading....thanks.
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds: occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair.
~~ Chinese saying as quoted by Helen Nearing