Note I posted this on Lupus UK as well, as I am looking for support from both sides of the coin. Bechets UK has been my main stomping ground for some time, since I thought this was my diagnosis for about a year now! However...today my new rheumatologist told she she is in disagreement with the diagnosis. Here is what I posted on Lupus UK. Any and all thoughts welcomed!
Hi Folks. I need some advise. I am very anxious and feeling bummed. About 1.5 years ago I fell ill (about 1 year after the delivery of my first born). The whole host of sxs (e.g., joint pain, muscle cramping and pain and locking, fatigue, significant weight loss, hair loss, diarrhea, conjunctivitis, vaginal ulcers, headaches). Over time, I have become sensitive to the sun, I now have spinal pain and I cant use my hip. Various rheumatologoists have said lupus, lupus-rheumatoid, autoinflammatory disease, Behcets, and "you have a rare disease." Today I switched rheumatologists and she debunked what I have been treated for, for the past 1.5 years which was autoinflammatory disease with Bechets features (flat out debunked it). And said I have "features of connective disease and inflammatory arthritis). I have never had positive blood work which makes this more complicated. She is starting all the blood work over again and basically said she isn't sure where to go with this. I am on some heavy duty meds as well, and recently titrated off prednisone after 1.5 years. I just don't know what to think now and where to go. Anyone have this experience. I feel like I am on a rollercoaster that never ends. Thanks for any advice.