A frustrated update- this is long. Sorry!!!!

Hello everyone. Its been a few weeks since I posted, just wanted to process everything that's been going on lately. I had my first rheumy appointment almost 3 weeks ago. I was really impressed with the doctor, I feel she was very thorough with her assessments, and didn't give me that condenscending feeling I usually get when I tell certain doctors my symptoms. She spent more then an hour with me (which shocked me!), and we discussed the possibility of lupus, and her findings from her assessment of my symptoms. I was sent home with scripts for atarax and prednisone, and scripts for a ton of bloodwork, a brain MRI and chest x-ray.

I got the bloodwork done last Monday (and at 100lbs, I didnt think I would have enough... 13 vials!!!), and on Friday got a voicemail with "good news." Call the rheumy back, and she tells me that the ANA and that double stranded DNA test were negative. Fab! That being said, I still have 6 of the 11 criteria, so she feels she has to treat me for lupus, and do more tests. I also was deficient in C1 inhibitor, which is a cause for the angioedema I've been experiencing, and she has referred me to an immunologist for further work-up. After a bit of researching (gotta love Google!) I found out that the angioedema and lupus can be related to each other. So she called in a script for Plaquenil, Im still staying on the Pred, and I see her in a week and a half after the MRI and chest xray.

I just feel like I've been told "You have it but you don't." I guess I'm glad that she is treating me, and not just leaving me wondering what the heck is wrong with me. Is this normal practice to start Plaquenil if lupus is just suspected? I can honestly say the steroids are making me feel better (although with my attitude lately, Im sure my husband begs to differ!) The rashes and discoid patches are better, the joint pain and swelling is better, and the facial swelling is much better.

Has anyone else experienced this? From what I read, with a negative ANA, SLE is highly unlikely, but it's not impossible, right?

In many cases, it is preferable NOT to have an actual diagnosis of lupus -- such as if you need to change health insurance carriers or get disability insurance. Because lupus has such a wide variety of symptoms, sometimes doctors want to wait a bit before making a final diagnosis....trying different medications and approaches gives them a lot of information that helps with finalizing the dx. Quite a few of us on the board have lupus, diagnosed lupus, but have never had a positive ANA - not sure where you found "negative ANA, SLE highly unlikely", but I've not found that anywhere in the 8 years I've been reading about it, here & elsewhere. The criteria is 4 of 11, as described in the link below. There is NO single, definitive test despite what you may read in some places. The links at the bottom of my signature will give you lots of other good information & ideas. Cheers,

All my blood work is negative and my signature shows my dxes.