Heather,
I am so sorry. It is hard when you get a piece or 2 of the puzzle, but no real answers. I am also very low on Vit D and I just cannot keep it in me. It makes me very ill. We are now switching to Zofran from phenergan to try to help me get some.
The blood work is NOT the only diagnosis criteria for lupus. and the back and forth results are something I have heard of from others who have lupus. We have a strong lupus and chronic pain support group here, and I have known the women for 25 years or more). If you want to email someone with lupus and years of experience with the wierdness it can produce, I will put you in touch with my mom.
Xrays OFTEN do not show problems unless the bones are visibly damaged. That leaves a lot of room for damage that is not visible. A bone scan (Not bone density, but bone scan) will show areas where there is arthritis and inflammatory activitiy. I did not find the bone scan uncomfortable or scary.
Have they discussed neurontin or lyrica for nerve issues? Neurontin is the older medication, lyrica is the newer one and is very effective. I have had great experiences with it. It is worth asking the doctor about.
I understand the bus thing. I sometimes wonder if it wouldn't be a good idea, but also am not actively suicidal.
I hope that you can get answers and help soon.
Sending hugs,
Susie
