I wish so much that I had more to offer you. I completely understand the limbo that you're in right now. I went through the same thing with all my doctors. It took a decade for my diagnosis to come, and it only happened because I had become so sick and full of inflammation that the symptoms couldn't be anything but Lupus. All my blood work was high positive too. I wish it didn't take a serious incident to convince the medical community.
There are some people who have rheumies or family doctors that will begin treatment without a firm diagnosis. Usually because there is so much inflammtion going on, that starting a regime of prednisone or an immune suppressant is clearly the thing that needs to be taken. The risk in doing that is that blood work done after treatment has started will sometimes present a very normal, healthy individual. The treatment is working and so it masks the symptoms and blood work. It can actually set back the time frame of getting a diagnosis because the symptoms and blood work look fine. It's a catch 22.
Unfortunately, for many of us, the "may" turns into a "definite" once the symptoms get bad enough to warrent a hospital stay in order to figure it out once and for all. I had a 5 day stay at the hospital. My symptoms were severe pleurisy, heart palpitations, chronic anemia, and severe weight loss. I thought I was dying. So did my family.
Have you been able to see an internal medicine specialist? I had tremendous success with mine. She was the doctor that finally put the pieces together and believed me when I said I didn't feel well.
I know this is extremely frustrating for you. 5 years is a long time. I'm going to do some research on your iron problem. That is something that should be taken seriously by your doctors.
Take care Superwoman, post when you can okay!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus