Questions for the rheumy

I've been having strange "episodes" coming and going for the past couple years.  My primary has ran many tests including blood testing for Lupus.  It has always came back negative.  So I just sort of let it go for a while.  Well now one of the symptoms I am getting - which is what brought me to the doc this time - is leg weakness.  I feel like I'm going to collapse at any given time and it worsens with activity.  Plus severe back lower back pain (I was diagnosed with Sacroiliitis) and recieved steroid injections.  I recently had an MRI and I'm waiting for the results of that.  But some other odd things that have been happening is sporadic rashes, major heat intolerance, night sweats, headaches, blurry vision, nose sores, rash on my face (upper lip, chin and across my nose and under my eyes), tingling and numbness in my feet upon sitting, stiffness (oh boy the stiffness is horrible!), hot flashes, sometimes having trouble swallowing, Raynauds - the list goes on and on.  But anyway, I went thru another battery of tests and this time my ANCA came back positive so my doc is referring me out to a rheumy.  I guess the ANCA can come back positive with someone who has an IBD but because of my other symptoms she felt safer to refer to a specialist.

So, what sort of questions should I be asking the rheumy doc?  What can I expect from my first visit?  My appt with on April 7th.

Red, don't get discouraged.  Many of us went for years knowing or thinking we have Lupus.  Personally, I have had symptoms of Lupus since 1985 but didn't get the official diagnosis of Lupus until September '07.  I had doctors who thought I had Lupus and at least treated me for it.  You can go many years and get false negative test results.  It's so discouraging and depressing, when you can see it written on the wall, why can't everyone else?  They've come a long way in 30 years with autoimmune testing but for some reason you can still have it and your tests be negative.  One of the tests they do for Lupus, the Anti dsDNA has been negative on me for years.  Then one day they take the test and it's not only positive, it's high.  In one month it has jumped up 500 points to 2,700.  IMHO it has to get to a point where it effects your body in one way or another for it to be detectable.  You can have all the symptoms in the world but doctors hate to stamp Lupus on your records because it's so hard to get health insurance after you get a diagnosis of it.

I'm not quite sure what I thought would happen when I finally got that diagnosis of Lupus, maybe I thought I'd start to feel better.  Instead, I have progressively gotten worse to the point I can't take care of the things in my home, let alone myself anymore.  A lot of us have had doctors look at us and tell us "it's all in your head."  My best advice that I could give you would be if you have the symptoms but not the test results to back you up and your doctor is unwilling to treat you based on your symptoms, find another doctor and if he does the same thing then you keep on looking for a doctor until you can find one that will listen to YOU, listen to your symptoms, and treat you on those, not on some blood tests that can give false negative results.  Above all, remember you are not alone!

Good luck!