Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Recently a primary care Dr. suggested my ear redness and swelling could be caused by RP. I also have a fairly severe problem swallowing. Yesterday I saw the first of a series of specialists, a dermatologist, who had never even heard of RP. My knowledge of RP being greater than hers did not help the flow of our visit. She returned to the exam room and said my throat problem was not caused by RP because it is the windpipe, not the esophogus, that is involved with RP. Before my next Dr. appointment tomorrow I would like to know if RP causes anyone else has difficulty swallowing. Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 I have a problem swallowing and am limited in what I can eat. My Rheumy always asks me if I am having difficulty swallowing because of the RP, so I'm assuming it is part of the disease. My swallowing problem is also affected by my Sjogrens Syndrome. Sandy > Recently a primary care Dr. suggested my ear redness and swelling > could be caused by RP. I also have a fairly severe problem > swallowing. > > Yesterday I saw the first of a series of specialists, a > dermatologist, who had never even heard of RP. My knowledge of RP > being greater than hers did not help the flow of our visit. She > returned to the exam room and said my throat problem was not caused > by RP because it is the windpipe, not the esophogus, that is involved > with RP. > > Before my next Dr. appointment tomorrow I would like to know if RP > causes anyone else has difficulty swallowing. > > Thanks so much. > > > 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 July 12, 2001 Report Share Posted July 12, 2001 Before my next Dr. appointment tomorrow I would like to know if RP causes anyone else has difficulty swallowing. Sometimes I have trouble swallowing. I also at one point had a serious complication of RP with my submandibular gland, which produces salvia. it's a long story, but if you need to know more, let me know. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 In a message dated 7/12/01 10:40:48 PM Pacific Daylight Time, ramius@... writes: << Before my next Dr. appointment tomorrow I would like to know if RP causes anyone else has difficulty swallowing. Thanks so much. >> Welcome to the group!! Please let us know your name..I'm sorry your dr visit went so poorly. Do you have a ENT or Rheumy? I too have difficulty swallowing, My ent told me it was from GERD. I think he was half right, once put on medication for it it did get somewhat better, but didn't completly clear it up and it seems to be worse during a flare. Glad to have you in the group... Please let us know a little about yourself. How long have you been dx with RP, etc. You have found a wonderful group. Looking forward to getting to know you better. hugs california Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 HI, MY NAME IS TONYA AND YES IT DOES MAKE YOU HAVE DIFFICULTY IN SWALLOWING. THE TIGHTNESS IN YOUR THROAT WHEN YOU SWALLOW MAKES YOU FEEL LIKE YOU ARE LOSING AIR, AND WHEN YOU PANIC IT GETS WORSE. MY DOCTOR PUT ME ON PREDNISONE AND I FELT MUCH BETTER. UNFORTUNATELY, NOW I HAVE A PERMANENT TRACHEOTOMY TUBE FOR ME TO BREATHE. MAKE SURE WHEN YOU GO TO YOUR DOCTOR YOU TELL HIM/HER EVERYTHING THAT YOU HAVE EATEN, TAKEN, AND ALL YOUR SYMPTOMS. THE BEST DOCTOR I FOUND FOR MY RP WAS A ENT DOCTOR.BUT THIS IS ME. WHATEVER WORKS BEST FOR YOU. THIS IS HELPING ME OUT BY TALKING ABOUT IT. IT DOESN'T HURT SO MUCH. GOOD LUCK! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Hi Tonya, Nice to meet you. Are you still on the Pred? Do you take any other medication? I agree with you, when you panic it does make it worse, but it can be so scarey. Hugs, Sandy ----- Original Message ----- HI, MY NAME IS TONYA AND YES IT DOES MAKE YOU HAVE DIFFICULTY IN SWALLOWING. THE TIGHTNESS IN YOUR THROAT WHEN YOU SWALLOW MAKES YOU FEEL LIKE YOU ARE LOSING AIR, AND WHEN YOU PANIC IT GETS WORSE. MY DOCTOR PUT ME ON PREDNISONE AND I FELT MUCH BETTER. UNFORTUNATELY, NOW I HAVE A PERMANENT TRACHEOTOMY TUBE FOR ME TO BREATHE. MAKE SURE WHEN YOU GO TO YOUR DOCTOR YOU TELL HIM/HER EVERYTHING THAT YOU HAVE EATEN, TAKEN, AND ALL YOUR SYMPTOMS. THE BEST DOCTOR I FOUND FOR MY RP WAS A ENT DOCTOR.BUT THIS IS ME. WHATEVER WORKS BEST FOR YOU. THIS IS HELPING ME OUT BY TALKING ABOUT IT. IT DOESN'T HURT SO MUCH. GOOD LUCK! 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 July 14, 2001 Report Share Posted July 14, 2001 Tonya, welcome to the group. How long have you had RP? Sounds like you have a great dr. Please keep posting and asking questions. We all learn alot from this. Thanks for the info you have already shared with us. hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2001 Report Share Posted July 17, 2001 Hello, I have at times problems swallowing too. I always assumed that if my trachea was swollen that that caused my swallowing problems as there wouldn't be as much room in the throat. You know what the old saying is about assuming. I too would like to know for sure if RP is causing the swallowing problem. Please let me know what you find out. Thanks, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2001 Report Share Posted July 17, 2001 Hello everyone, The docs I have talked to so far, an ENT and Rheumy, both think it is not RP itself. The ENT says it is not unusual for someone with RP to also have acid reflux. I don't know why we might have both but he says they often go together. He also said you can have acid reflux without realizing it, without heartburn. It is this acid reflux that would cause the swelling. I am scheduled for a berium test next week. I will let you know what I find out from all of this. My best to all. Kim Re: RP Symptoms Hello, I have at times problems swallowing too. I always assumed that if my trachea was swollen that that caused my swallowing problems as there wouldn't be as much room in the throat. You know what the old saying is about assuming. I too would like to know for sure if RP is causing the swallowing problem. Please let me know what you find out. Thanks, Ellen 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...
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