3 weeks ago or so I got a call from my rheumy's office regarding some bloodwork. The nurse told me I definately have SS (I said "really, I
never test positive for anything!) Her response was that I definately have it. Not a big surprise to me as I'm symptomatic, and have an aunt
with SS.
Flash forward to yesterday- my follow up with the rheumy. He sits down, I say "Ok, Sjogrens. BTW, which antibodies did I test positive for?"
He gets the paperwork out and says "This is all negative." Um, what the what? I said your nurse called me. Then he showed me a note on the
lab report and said "This is my handwriting- that's what I told her to . I don't know what I was thinking or thought I saw." He was very
apologetic and took total responsibility instantly. This guy is a very respected Dr.
Then again, he went forward to say 1/2 the people with SS don't test positive anyway. I do have a positive ANA. He also said the symptoms
still are most suggestive of SS. He told me that he still believes I have two problems- an auto-immune connective disease, and a
neuromuscular disease. Then he mentioned that I may yet have lupus. (I haven't ever tested positive for it, but I don't know much about it or
how common it is to test negative.) One of my biggest problems is constant fevers with gland pain. I'm pretty sure he's thinking I have lupus
with secondary SS. Particularly since at check out I realized he had coded me as lupus. He kept emphasizing to me that he was going to treat
the symptoms and not worry about a specific dx unless I really wanted a lip biopsy (which he didn't recommend.) He did put me on plaquenil
and Salagen. I certainly don't feel like he's blowing me off or minimizing.
But...I'm so darn frustrated because I thought for one, I had a definitive test result! Story of my life is "probable" in front of everything.
I'm trying to understand about lupus without freaking out because the descriptions seem more dire long term.
Thanks for letting me vent!