I am new to the forum and, like a lot of you, am having difficulty getting a diagnosis.
I will try not to be long-winded, so in brief:
~ Diagnosed with lupus in 1991, via a COOMBS test
~ Besides joint pain, malaise, Raynaud's, and the occasional malar rash, pretty much asymptomatic for 20 years.
~ In 2011, developed dry eyes and mouth, doctor suspected Sjogren's and wanted me to see a rheumatologist.
~ Rheumatologist said I tested negative "for everything" except a very low titer, speckled, which he said could mean mixed connective tissue disease but it wasn't because I "didn't look like" I had scleroderma. He tried to get me in a fibromyalgia study and would not test further for anything else.
~ Rheumatologist later was found to diagnose fibromyalgia no matter what, just to get study participants - my doctor will no longer refer patients to him.
~ Primary doctor unable to find another rheumatologist in this area who takes Medicare, so we both decided to take a "wait and see" approach.
~ A year ago I went back to my doctor for my annual, and he had another doctor in for him due to illness, and this doctor examined my hands and asked me had I noticed they were shiny and that the skin was tight? Which, honestly I hadn't, having never thought to look. Didn't follow up on it because I wasn't really feeling ill but I did start to pay more attention to my hands after that. Only other symptom which may or may not be related is my blood pressure was spiking to 200/100 over several months, and I couldn't get it under control with diet so doctor prescribed an ACE inhibitor.
~ 6 months ago I got fairly ill with low-grade fever most nights, joint pain and malaise worse than usual, and some facial changes such as lips disappearing and mouth seemingly getting smaller, fingers go from no wrinkles to severely wrinkled at random times, hurts to type I think b/c I am losing padding on my fingertips, still have sicca, and I was losing weight at the rate of 1 pound/day without dieting. Went to doctor, who said my hands had inflammation but he was pretty sure it wasn't RA (no deformity like that, I guess). He ordered a LOT of tests.
~ Nearly all tests came back negative, except for an elevated ESR, high basophils, and low a/g ratio. All antibody tests were negative, including SSA, SSB, Sm, RNP, SCL-70, Jo-1, Centromere B, dsDNA, and Histone. ANA antibody with reflex was 42 (negative). Anti-DNA Ab, Double stranded was <1 (negative). Urinalysis was normal. RBC/WBC both normal. And so on.
~ I have an appointment to see a rheumatologist in a nearby town next month. She has interned at Johns Hopkins so she seems like she knows her stuff. She did research at Stanford on how certain cells interact and cause inflammation. I have confidence in her but in the meantime I still feel really ill.
I've been really ill since April. I don't understand why all the tests came back negative. I would have bet that at least ONE would have indicated something autoimmune, but no. At the bottom of the test it said, "The possibility of autoimmune disease remains", so I guess someone saw something somewhere - darned if I know.