Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Dear Ann, I had a biopsy of the ear year ago. Usually its non conclusive. Because RP is so rare I truthfully doubt your doctor has seen 50 patients. Sorry to be a pessimist. I do wish you luck maybe you found a keeper....Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Good Morning, Kathleen in Texas, This is in Kansas City. What do your doctors think is causing the pain in your chest? My trach and main airways start to collapse in two areas when I lay flat on my back but there's no pain. However, when I first started having symptoms in late 2000, I had incredible pain in my chest-even the skin hurt. It was diagnosed as costochondritis. It had done some pretty severe damage prior to my RP diagnosis in March 2001. Do you recall what stronger meds were being considered? BTW, we're supposed to get the snow starting at noon today. Doesn't the weather know it's March 1st??? I've been in Dallas when it has snowed and the freeways are a real circus, aren't they?!! (KC) New rheumy Re: Well, thanks to all the advice about my questionable " asthma " diagnosis, I decided to get a second opinion and I am SO glad that I did. My new rheumy had the same reaction to the pulmonogist's glib " no airway collapse, no need for further worry! " answer to all my questions. She said the same thing I said, " Well, no collapse yet - but are we going to wait for it to happen before we get worried!!!!! " She is going to be much more aggressive and I while I am nervous about the stronger drugs she is talking about, I am ready for the pain to stop. She is also ordering a CT scan of my airways, something the other rheumy was reluctant to do since to pulmonogist assured him I was fine. (That is I can still breathe on my own... - quite a high standard, huh? Boy, he made me so mad!!!!!!!) Re: Re: My only misgivings are in how to tell my old rheumy, whom I really like, that I am, in essence, firing him. All the other times I have switched doctors I had no problem because they were jerks. ;- ) He is a really nice guy. I just think that he is too conservative and also he's not a provider on my insurance plan, so I pay 20% instead of my copay. That was really getting expensive! Any advice? Re: Re: Anyway, thanks for all the answers to my many questions and I hope that everyone has a wonderful weekend. It's supposed to snow here (Texas) this weekend!!! Re: Re: Kathleen (Tx) Re: -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 , The pain is actually in my throat, larynx, and trachea. I don't have chest pain per se, actually it is the cartilage in my rib cage that aches -- costochondritis! So we have that in common. My former rheumy wanted to start me on Dapsone. The new one said that's fine, but probably I will need to move to MTX. My sister was in to see her, my new rheumy, today as well. She has had joint pain and swelling in her hands and recently began having throat symptoms that baffled her PCP. This was her first visit to a rheumy and she actually made the appointment independently of me. Then we turn out to see the same doctor! The rheumy said that while they don't think that RP is genetic, they really don't know enough to say no. I guess Coralie and 's mom might have something to say about that. Anyway, they told her they will be watching her very closely. The thing that worries me is that they told her she has a heart murmur. I told her that she needs to pursue that aggressively, since RP can affect the heart... Yes!, Dallas is a MESS in the snow and sleet and it has been drizzling all morning. My son is supposed to have a soccer game tomorrow morning. I sure hope it gets called off. ;-) Kathleen (Tx) New rheumy > > > Re: Well, thanks to all the advice about my questionable " asthma " diagnosis, I decided to get a second opinion and I am SO glad that I did. My new rheumy had the same reaction to the pulmonogist's glib " no airway collapse, no need for further worry! " answer to all my questions. She said the same thing I said, " Well, no collapse yet - but are we going to wait for it to happen before we get worried!!!!! " She is going to be much more aggressive and I while I am nervous about the stronger drugs she is talking about, I am ready for the pain to stop. She is also ordering a CT scan of my airways, something the other rheumy was reluctant to do since to pulmonogist assured him I was fine. (That is I can still breathe on my own... - quite a high standard, huh? Boy, he made me so mad!!!!!!!) > Re: > Re: My only misgivings are in how to tell my old rheumy, whom I really like, that I am, in essence, firing him. All the other times I have switched doctors I had no problem because they were jerks. ;- ) He is a really nice guy. I just think that he is too conservative and also he's not a provider on my insurance plan, so I pay 20% instead of my copay. That was really getting expensive! Any advice? > Re: > Re: Anyway, thanks for all the answers to my many questions and I hope that everyone has a wonderful weekend. It's supposed to snow here (Texas) this weekend!!! > Re: > Re: Kathleen (Tx) > Re: > > -- > > > > 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 March 1, 2002 Report Share Posted March 1, 2002 Kathleen (TX) Thanks for the reply. I'm always curious about others with pulmonary involvement since that's where my RP really did its thing. I was also diagnosed with Wegener's Granulomatosis. I'm curious about the different meds prescribed. My local Rheum. and Pulm. docs mentioned Methotroxate or Imuran, but they referred me to the Mayo Clinic where the diagnoses was confirmed and their treatment plan was Cytoxan and Bactrim. Cytoxan's a real trip, but I think it's working since my breathing has improved and I haven't had a flare anywhere else for a year. But I get sooooooooo tired. The genetic issue also puzzles me. I hope Dr. Buckner is aware of Pia's children and others who have immediate family members with RP. I'm awaiting her paperwork to have my blood drawn for her research, but it's been almost 2 weeks. I certainly have more questions than patience sometimes!!! One thing about Texas: it could be 60 degrees and sunny tomorrow! Gotta love it. Take care, (KC) Original Message: ----------------- From: Kathleen kath1@... Date: Fri, 1 Mar 2002 10:45:39 -0600 To: Rpolychondritis Subject: Re: New rheumy , The pain is actually in my throat, larynx, and trachea. I don't have chest pain per se, actually it is the cartilage in my rib cage that aches -- costochondritis! So we have that in common. My former rheumy wanted to start me on Dapsone. The new one said that's fine, but probably I will need to move to MTX. My sister was in to see her, my new rheumy, today as well. She has had joint pain and swelling in her hands and recently began having throat symptoms that baffled her PCP. This was her first visit to a rheumy and she actually made the appointment independently of me. Then we turn out to see the same doctor! The rheumy said that while they don't think that RP is genetic, they really don't know enough to say no. I guess Coralie and 's mom might have something to say about that. Anyway, they told her they will be watching her very closely. The thing that worries me is that they told her she has a heart murmur. I told her that she needs to pursue that aggressively, since RP can affect the heart... Yes!, Dallas is a MESS in the snow and sleet and it has been drizzling all morning. My son is supposed to have a soccer game tomorrow morning. I sure hope it gets called off. ;-) Kathleen (Tx) New rheumy > > > Re: Well, thanks to all the advice about my questionable " asthma " diagnosis, I decided to get a second opinion and I am SO glad that I did. My new rheumy had the same reaction to the pulmonogist's glib " no airway collapse, no need for further worry! " answer to all my questions. She said the same thing I said, " Well, no collapse yet - but are we going to wait for it to happen before we get worried!!!!! " She is going to be much more aggressive and I while I am nervous about the stronger drugs she is talking about, I am ready for the pain to stop. She is also ordering a CT scan of my airways, something the other rheumy was reluctant to do since to pulmonogist assured him I was fine. (That is I can still breathe on my own... - quite a high standard, huh? Boy, he made me so mad!!!!!!!) > Re: > Re: My only misgivings are in how to tell my old rheumy, whom I really like, that I am, in essence, firing him. All the other times I have switched doctors I had no problem because they were jerks. ;- ) He is a really nice guy. I just think that he is too conservative and also he's not a provider on my insurance plan, so I pay 20% instead of my copay. That was really getting expensive! Any advice? > Re: > Re: Anyway, thanks for all the answers to my many questions and I hope that everyone has a wonderful weekend. It's supposed to snow here (Texas) this weekend!!! > Re: > Re: Kathleen (Tx) > Re: > > -- > > > > 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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