Let me back up a bit.
For over 10 years, I have had the diagnosis of “Lupus with Secondary Sjogren’s Syndrome”. Those are auto-immune diseases and the most basic explanation for them is that my immune system gets confused and attacks stuff that it shouldn’t. Like my joints, skin, tear ducts, major organs. You know – things it should be protecting.
When I moved to this area, I got my first “real” doctor and she did my blood work again and again because she didn’t like what the results were showing. Then she told me I might have lupus and referred me to a rheumatologist who agreed. Each doctor expected me to be falling over with relief at this diagnosis, as people with autoimmune problems generally have tons of random symptoms that most doctors say are pretty much imaginary. For years, patients will be told things are “all in their heads” and it can be terribly difficult to get a diagnosis. And no one will treat you for something if you can’t get a diagnosis for it, because insurance companies want a diagnosis in order to pay for treatment (or deny it). I felt generally tired and achy and I thought that was just a part of getting old, so I wasn’t really thrilled to have a chronic illness and medication to take every day for the rest of my life.
Fast forward to May 2011. I get to see a new rheumy because my insurance changed and I am no longer allowed to see the other one over the state border. Being a brand new patient means I get the major battery of lab tests, even though he also has all my past records. Doctors do love their lab tests. He’ll see me every six months from now on unless I have a problem.
Today at my visit he tells me that I have “Primary Sjogren’s Syndrome“. That’s it. I do not have lupus. I DO NOT HAVE LUPUS. (That isn’t nearly as satisfying to type as it is to yell over the phone to your husband by the way.) There is no evidence of lupus in my test results and I have no idea why. He says it’s not the kind of thing that comes and goes. I’m pretty sure I have super powers. In any case, I’m not nearly as sick as I was told I am. I am not going to die from this. Ok, I am LESS likely to die from this (SS is the only autoimmune disease that can turn malignant, in @ 8% of people).
Yeah, it’s still an auto-immune illness and I’m still taking Plaquenil, but there is much less chance of ever having major organ failure and taking the more serious and toxic immuno-suppressing drugs. And everyone’s got to have something, right?