What Now?

I've just been diagnosed with retroperitoneal fibrosis. I thought sure I had a kidney stone. I had a fever every day for over a month, but my lab work revealed no abnormalities and all my test came back fine.I finally drove myself to the emergency room and this what the outcome is. I've only been able to find to two hospital/doctors that specialize in this, one is in Texas and the other in New York. They have referred me to a Cancer doctor since they treat it as they would cancer with several medications. I had a stent put in uretha . They said I would have to have it change every several months. I still have the fever every day. They have given me three different rounds of antibiotics to no avail. When I have the fever, I feel sooooo sick. I went from a very active person to a bonifide couch potatoe. That has been the most difficult thing for me. llwa62
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May 15, 2012