Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 I was just wondering what made most of everyone's doctors finally realize that their patients had RP. Maybe we could use that as part of the symbol. I am most grateful that Brett was FINALLY dx. B. At 05:30 PM 1/27/2000 EST, you wrote: >From: Lu1953@... > >Hi everyone, >I think we need to use something that would be recognized with this illness. >I was reading the make-a- wish site today and they have a wish-bone for >theirs...... Which makes sense....I think it needs to be something that is >one definite underlying feature of RP... >But hey what do I know...that's just my opinion...Okay I know everybody's got >one...LOL I will shut up now...LOL >Love, >Lu > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 In a message dated 1/31/00 8:47:47 AM Central Standard Time, susan.burdick@... writes: << I was just wondering what made most of everyone's doctors finally realize that their patients had RP. >> RED EARS!!! and pain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 In a message dated 01/31/2000 8:53:04 AM Central Standard Time, Idigflower@... writes: << < I was just wondering what made most of everyone's doctors finally realize that their patients had RP. >> RED EARS!!! and pain >> You are absolutely correct on that, when I was being dx that's all they kept looking for and no other symptom seem to matter to them. Of course, I think most doctors have a big ego problem. and I don't completely trust any Of them, I always second guess them and get other opinions. They always say Nurses make the worse patients. I guess they are right. LOL Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 With all the illnesses my son suffered first with his airway closing they did not diagnose him with RP until his ears became affected I don't think we want to see the sight of a deformed ear as the symbol for RP. But I agree maybe it should be something associated with the illness combined with a sign of hope so maybe together it would work. Love, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 In a message dated 1/31/00 10:40:20 AM Central Standard Time, Grfm@... writes: << him with RP until his ears became affected I don't think we want to see the sight of a deformed ear as the symbol for RP. >> Gail, I was not saying deformed but " RED " that is how a majority of RP people 1st get DX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Your right except my son is an African American so his ears were not showing red they were swollen and painful and turned darker than his normal complexion. Love, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Hear Hear...and I love 's blue moon idea. B. At 11:38 AM 1/31/2000 EST, you wrote: >From: Grfm@... > >With all the illnesses my son suffered first with his airway closing they did >not diagnose him with RP until his ears became affected I don't think we want >to see the sight of a deformed ear as the symbol for RP. > >But I agree maybe it should be something associated with the illness combined >with a sign of hope so maybe together it would work. > >Love, > >Gail > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 You're so right , but when Brett's ear was just red they said it was 'acne' or an allergic reaction to something. It had to be swollen totally out of shape for them to realize RP. B. 11:42 AM 1/31/2000 EST, you wrote: >From: Idigflower@... > >In a message dated 1/31/00 10:40:20 AM Central Standard Time, Grfm@... >writes: > ><< him with RP until his ears became affected I don't think we want > to see the sight of a deformed ear as the symbol for RP. >> > >Gail, I was not saying deformed but " RED " that is how a majority of RP people >1st get DX > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 After four years and 5 trips to the ER. I started reading medical books. I found 1 1/2 pages on RP. I copied the pages and took them to my Doc. Then with the speed of the HMO system, it was another year before they sent me to a Doc that had actually treated RP . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 In a message dated 01/31/2000 3:22:07 PM Central Standard Time, HAIGJIM@... writes: << Then with the speed of the HMO system, it was another year before they sent me to a Doc that had actually treated RP . >> That's pitiful Jim, something should be done about this. No one should have to wait that long for the proper treatment. How are you feeling? Is your head still hurting? I hope you are doing better this week. Let me know.Okay? Take care, Love ya! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 My doc picked up on the two really swollen red ears and the cough that wouldn't stop! Patty B. Quote Link to comment Share on other sites More sharing options...
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