What Mari described is the way that it should be. However, I've found that in real life, we often run into arrogant docs who want to only believe the test results and symptoms that they themselves see. Anything that a previous doc observed is disregarded. It doesn't make sense to me, but it seems to have something to do with their egos - sigh!
Good luck, Manderson.
I havent read all posts, a bit tired.
But I agree with everything Rob said in his first post. Once you get your diagnosis... do not allow another doctor to remove that diagnosis unless you feel you were not properly diagnosed in the first place. You have to make it clear you arent asking for a second opinion, you just need your condition monitored.
I have never allowed someone to take away my diagnosis. I was very definitively diagnosed in the beginning and while my blood work may look good at times, that is no reason to strip my diagnosis but a beautiful indicator that my treatments are working to control my disease!!!
Doctors dont know everything, even Rheumys arent the best. To be honest I think they mostly treat the elderly for RA and can often get very complacent, a lot like GPs. Good ones are hard to find and when you do find a good one hang on to them!! A good one would understand that blood work is not 100% of a lupus diagnosis and will look good if you are on medication.