Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Hello all.. It has been a while since I posted & I am still new to the group. This is all so new to me that I did not know enough to know what I don't know. I am becoming frustrated enough with drs. to know I need help so I can fight for myself. The rheumy I am seeing says there is no way to positively diagnose RP without a biopsy. He seems skeptical that I have RP but he has not seen my ears when they are really inflamed. He said I should do nothing until I flare and they will then do the biopsy. This makes sense but... when is red, red enough?? My ears get red for a short period of time almost every day. On one occasion, when they were a little more red than usual I went in. By the time I was able to contact the dr they were not " red enough " . Yesterday, again both ears were red. After about an hour one of them began to throb. I called the dr. It took him 45 minutes after he got the message to call me back & by then they were returning to normal. It was then that he told me I needed to wait until the flare had lasted at least 2 days before calling him. This really bothers me. I am beginning to have times where it feels as if bugs are crawling along my ear. I think I am beginning to have nerve damage from all of the mini-flares. What does the dr really need from me? How long do you think I may have to do letting the RP damage my ears until I can get a diagnosis & start treatment? Thanks for your help. I read all your posts & will try to contribute more as I get a handle on some of this. Quote Link to comment Share on other sites More sharing options...
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