I have had a lot of mixed results in the past and even now with my kidney tests although I've been told definitely kidney disease. It took years for my ANAs to be constant and elevated. Same for the false positive syphillis test. They said borderline lupus 10 years ago and looked for everything else but lupus until 2 years ago when it became more obvious/severe. My SED rate and Rh factors are always negative, yet I have severe rheumatic arthritis. Apparently, my course of lupus doesn't make sense to my doctors and my doctors don't make sense to me. Fortunately, it seems that you have a competent and caring doctor, which is a blessing. Probably a good idea to rule out other possibilites, but it sounds more like lupus (vasculitis can also be a manisfestation of lupus). Did they test for RNP, IgG, IgA, lupus DNA, etc.? I wish my brain was working today so I would know what the additional tests were called (?ENA's). They ran a bunch of tests on me to see what type of lupus I had. Apparently, some test can also show vasculitis, Antiphilosolipid Syndrome (APS), etc.
Some of us are odd lupies (no rash and either neuro or vascular problems initially). Hard to believe it gets odder, but we may not fit the experts criteria and pattern for some time. It seems like a big puzzle where all the pieces have to fit perfectly. It can be a very frustrating experience when you don't fit the profile for years to come. Okay concentrate on getting better, most definitely. I finally came to the conclusion that whether or not they found the reason for my illness, I was still in need of treatment and needed to get better. Aside from not getting my prednisone and cellcept yet, I am pretty much receiving the best medicine I can get for my symptoms. The only concern for you and for others like me, is that they need to treat the entire disease faster and better...and not just treat the symptoms. Right now I know what it can do and want to slow the sucker down as much as possible. Still not sure if the other medications will do that, just hoping so. Best advice I can say is keep going and look for the best doctors available to you. I hope you don't have wonder for long - Take care - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.