Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Your doctor needs to read more recent data. External ear involvement is reported only in 1/3 of the presenting patients with RP. These numbers change the longer the person has RP. I had absolutely no external ear pain as I went deaf in my left ear and my trachea collaped. But I was still flarring. R. In a message dated 04/30/2001 9:37:15 PM Central Daylight Time, OneSuperMema@... writes: << But then, she's the dr. that told me I wasn't having an RP flare if my ears didn't turn bright red. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 DIANA THIS IS EXACTLY THE POIINT I AM AGRUING WITH MY DR. HE SAYS BECAUSE MY EARS DO NOT TURN BRIGHT RED AND SWELL EVERY TIME AND STAY THAT WAY THAT I AM NOT FLARING. BUT AT THE SAME TIME I AM IN SO MUCH PAIN IN THE EAR CANAAL THAT ITS NOT EVEN FUNNY AND THE EAR CANALS WILL BE RED AND SWOLLEN INSIDE BUT THE EXTERNAL EAR WILL NOT BE. MY EARS WILL TURN BRIGHT RED AT SOME POINT DURING THE DAY AND GET HOT AND HURT. ALSO I HAD A HEARING TEST AND HAVE BEEN TOLD THAT I AM LOSING MY HEARING. ALSO HE SAYS THAT BECAUSE BY NO BREATHING EPISODE DID NOT DO ANY PERMANT DAMAGE THAT IT MAY OR MAY NOT HAVE BE CAUSED BY RP. duh, WELL WHAT ELSE WOULD CAUSE IT. I CERTAINLY DID NOT STOP BREATHING JUST FOR THE HECK OF IT. AND I DON'T HAVE ANY OTHER ILLNESS THAT I KNOW OF. HOW DO WE CONVINCE THESE DR. THAT THIS IS THE RP WITH SOUNDING LIKE WE ARE BEING SMART. I KNOW MINE CERTAINLY WON'T LISTEN. DAWN -- In Rpolychondritis@y..., " drutledge " wrote: > Your doctor needs to read more recent data. External ear involvement is reported only in 1/3 of the presenting patients with RP. These numbers change the longer the person has RP. I had absolutely no external ear pain as I went deaf in my left ear and my trachea collaped. But I was still flarring. > R. > > > In a message dated 04/30/2001 9:37:15 PM Central Daylight Time, > OneSuperMema@a... writes: > > << But then, she's the dr. that told > me I wasn't having an RP flare if my ears didn't turn bright red. >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 DIANA THIS IS EXACTLY THE POIINT I AM AGRUING WITH MY DR. HE SAYS BECAUSE MY EARS DO NOT TURN BRIGHT RED AND SWELL EVERY TIME AND STAY THAT WAY THAT I AM NOT FLARING. BUT AT THE SAME TIME I AM IN SO MUCH PAIN IN THE EAR CANAAL THAT ITS NOT EVEN FUNNY AND THE EAR CANALS WILL BE RED AND SWOLLEN INSIDE BUT THE EXTERNAL EAR WILL NOT BE. MY EARS WILL TURN BRIGHT RED AT SOME POINT DURING THE DAY AND GET HOT AND HURT. ALSO I HAD A HEARING TEST AND HAVE BEEN TOLD THAT I AM LOSING MY HEARING. ALSO HE SAYS THAT BECAUSE BY NO BREATHING EPISODE DID NOT DO ANY PERMANT DAMAGE THAT IT MAY OR MAY NOT HAVE BE CAUSED BY RP. duh, WELL WHAT ELSE WOULD CAUSE IT. I CERTAINLY DID NOT STOP BREATHING JUST FOR THE HECK OF IT. AND I DON'T HAVE ANY OTHER ILLNESS THAT I KNOW OF. HOW DO WE CONVINCE THESE DR. THAT THIS IS THE RP WITH SOUNDING LIKE WE ARE BEING SMART. I KNOW MINE CERTAINLY WON'T LISTEN. DAWN -- In Rpolychondritis@y..., " drutledge " wrote: > Your doctor needs to read more recent data. External ear involvement is reported only in 1/3 of the presenting patients with RP. These numbers change the longer the person has RP. I had absolutely no external ear pain as I went deaf in my left ear and my trachea collaped. But I was still flarring. > R. > > > In a message dated 04/30/2001 9:37:15 PM Central Daylight Time, > OneSuperMema@a... writes: > > << But then, she's the dr. that told > me I wasn't having an RP flare if my ears didn't turn bright red. >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dear Diane, how did you know your trachae collapesed. Lets get gross here. I have a stupid cough that is deep, I belch but its not from my stomache. Having a problem taking my pills, sometimes gag and throw up. It doesn't come from my stomache just foamy, slimy stuff. Is that gross enough? The doctors, since 98 were always concerned about my wheezing, blamed it on smoking. Maybe its not that but after researching this it could be my trachea is not working right....Thanks....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dear Diane, how did you know your trachae collapesed. Lets get gross here. I have a stupid cough that is deep, I belch but its not from my stomache. Having a problem taking my pills, sometimes gag and throw up. It doesn't come from my stomache just foamy, slimy stuff. Is that gross enough? The doctors, since 98 were always concerned about my wheezing, blamed it on smoking. Maybe its not that but after researching this it could be my trachea is not working right....Thanks....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 I am also flaring, no ear involvement except I may be losing some hearing. My ears used to get red, hot, huge and hurt like hell. Now it happens only occasionally but not for long periods of time, maybe an hour, maybe only a few minutes. Because this disease is so strange we can't predict how it acts. Did your doctor do any blood work? That's usually how my doctor can predict it...very high ANA and sed rate. Hope this helps....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 In a message dated 05/03/2001 9:25:41 PM Central Daylight Time, dmorgan26347@... writes: << HOW DO WE CONVINCE THESE DR. THAT THIS IS THE RP WITH SOUNDING LIKE WE ARE BEING SMART. I KNOW MINE CERTAINLY WON'T LISTEN. >> Sweetie, maybe you need a different doctor! Thank God, mine not only listen, but are curious enough about this stupid disease to find out as much as they can without my having to ask. Is this the dr at Vanderbilt (?) who is not listing? I thought you liked your PCP, are they one and the same? Is there anyone at the university who can help? The most important thing they can do is to LISTEN! They don't know everything, it fact, when it comes to RP, they don't know much, but neither does anyone else but at least they admit it! Get another opinion! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 In a message dated 05/03/2001 9:25:41 PM Central Daylight Time, dmorgan26347@... writes: << HOW DO WE CONVINCE THESE DR. THAT THIS IS THE RP WITH SOUNDING LIKE WE ARE BEING SMART. I KNOW MINE CERTAINLY WON'T LISTEN. >> Sweetie, maybe you need a different doctor! Thank God, mine not only listen, but are curious enough about this stupid disease to find out as much as they can without my having to ask. Is this the dr at Vanderbilt (?) who is not listing? I thought you liked your PCP, are they one and the same? Is there anyone at the university who can help? The most important thing they can do is to LISTEN! They don't know everything, it fact, when it comes to RP, they don't know much, but neither does anyone else but at least they admit it! Get another opinion! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 In a message dated 05/04/2001 7:10:27 PM Central Daylight Time, grandm4@... writes: << always concerned about my wheezing, blamed it on smoking. Maybe its not that >> Sue, please tell me that you are not smoking anymore! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 In a message dated 05/04/2001 7:10:27 PM Central Daylight Time, grandm4@... writes: << always concerned about my wheezing, blamed it on smoking. Maybe its not that >> Sue, please tell me that you are not smoking anymore! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 In a message dated 05/05/2001 12:55:40 AM Central Daylight Time, grandm4@... writes: << ears used to get red, hot, huge and hurt like hell >> With the increased Meth, the flashes are subsiding somewhat, except one on Saturday when I was sure my ear had burst into flames! I guess I'll have to ask about the inner ear pain too, just ignored it, but I guess I'd better get it checked out. Love, Judy Quote Link to comment Share on other sites More sharing options...
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