Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 Can we help get this lady on the group? Hi, Someone was asking about dental and loosing their teeth, gums hurting, jaw bone aches, I know all this, I lost all my teeth real fast, the dentist said it was from being on the prednisone for many years (22) it seems to happen all of a sudden. I went to an Indian Health Hospital when this rp started 22 yrs ago and the doctors were so ignorant about this disease, I was like a freak to them, my ears all so swollen (3 times their size) all they could do was take pictures, I felt so humiliated by this, they were tying to tell me that it was from nerves, I am not a nervous person, they went on to take biopsys of the cartilidge behind my ears, so very painful, still came out with the same diagnosis, NERVES! i went to a private doctor after waking up and finding I was hemmoraging from my ears, pillows full of blood anytime I laid down, I finally went to a private arthritic doctor, one of the best in Alaska, and he has been treating me for all these years and the diagnosis was RP. Treatment of mass prednisone was given at that time, which stopped the hemmorraging but still had the flareups of RP. E-mail with any questions you have. I think I have had every symptom in the book so far. Have a good day! June in Alaska PS---Can't seem to get on the rpolychondritisonelist E-mail so I e-mailed this to you , thank you for the kind message, I wish you luck and good health. Quote Link to comment Share on other sites More sharing options...
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