Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 thank you for answering me, scared to death that I have RP but I can't go to a doctor........Are there any other deseases that could cause this ear problem.......betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 Betty, May I ask you a question? Are you afraid to go to the doctor because of a possible RP. Dx.? If it is RP. you want to start a treatment program as soon as possible. I think early Dx. is important. I was not dx. for 10 years, therefore I went untreated for a long time. If you would like to talk to me about it you can email me personaly if it would make you feel more comfortable. Hugs, Sandy > thank you for answering me, scared to death that I have RP but I > can't go to a doctor........Are there any other deseases that could > cause this ear problem.......betty > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 so, does anyone know how to tell if they're having a flair - without pain???? My one ear is totally disfigured from flares- then the dx and meds, now my other ear is changing but no pain- any guesses?? Re: ears, not to mention the bright red, hot, hot, hot! ears! Just like Rudolph lit the way for Santa, my ears can light up the fog and everything else!! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 My flares hardley ever give me pain. My doctor was astonished at how bad they could look and feel and me not be in any pain. My ears swell and get very red and hot, my nose will start to change colors to a light purple and then swell. I have found that I check my ears out in a mirror every couple of days to see if I am flaring. I also get such redness and drainage from inside my ears that I was treated for infections but they have decided that that is not the case. I think it is all part of the RP. There is no pain from the inside either, they just get clogged and yucky. Can't explain it I just know that it happens and often. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 When this all started, I thought it was because of the horrible (2nd and 3rd degree) sunburn I got out in San Diego. My ears were so blistered and bleeding that I was miserable. Once the burn finally started to heal, my ears didn't. It got so bad that I couldn't even put by head on a pillow because the pillowcase would touch my ears. I couldn't use the phone, I couldn't take clothes off over my head (and they don't make sweats with buttons!) it was horrible and I was miserable. ANd yes, my ears were swollen too! My PCP checked everything and then had to go check the medical books to find out what was happening. He told me I hand an inflamation of the cartilege ofmy ears. Which I though was a joke,WHO, besides me who gets evertyhing that is weird and flukey) would get an inflamation of the cartiledge of my ears. He started me on a Medrol pack (Prednisone) which only helped when I got at least six pills, so he changed that to 60 mg of Prednisone everyday which worked until he started weaning me off it, then it all started over again. Sent me to my Rheumy who said he didn't likethis at all and sent me to get a biopsy of my ears (that would have been OK, except that I had to be off all my meds for my strokes and arthritis for 10 days prior) So by the time I finally got the biopsy, I just wanted my meds back! They sent the biopsy to Mayo for analysis where it was confirmed I had RP. Once the panic finally abated, my doctor sent me to the group, who I swear knows more about RP than most doctors! So, are you ever inthe right place! For information and encouragement there is no better place to be! So, welcome, take a deep breath and know that this is not (necessarily) a death sentence, get on your email and have a good laugh, you have come home! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 In a message dated 2/18/01 10:59:32 AM Pacific Standard Time, JOstry93@... writes: << Which I though was a joke,WHO, besides me who gets evertyhing that is weird and flukey) would get an inflamation of the cartiledge of my ears >> Judy O, LOL I think we all thought that when we were first dx...LOL I also thought how bad can inflamation of your ears be???? Well, guess we found out!!! I felt so all alone and then I found this wonderful group. Can't tell you how much it helps... Yes, the laughter is the best thing. I just love it. I love your posts too. Keep em coming. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 I'm not sure, maybe someone else in the group knows. I know the swollen red ears was the basis of my md's diagnosis, he'd already eliminated everything else. Really no reason to be scared to death (I can say this NOW since I have already gone thru it!), but it really is important to get to a doctor, the best thing they can do is start you on medication. I'll keep you in my prayers and wish you good luck,. , any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 In a message dated 2/18/01 11:25:45 AM Pacific Standard Time, JOstry93@... writes: << , any ideas? >> Judy, my only imput is that if your ears are red and throbbing, you need to get to a dr right away and be checked out. Starting meds as soon as possible and stopping the flare is what we need to do. I know when I first had a flare, I kept thinking " It will go away, how bad can an ear get " WELL, pretty bad. It really hurts. I thought I had slept on my ear wrong at first. Everyone.....please don't wait. JUst go and get the right medication to stop it. Even when I flare now, I go into denial and don't want to raise the pred. Stupid I know!! Well, that's my sermon for the day.LOL Are you sorry you asked Judy.LOL hugs Quote Link to comment Share on other sites More sharing options...
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