Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Sunshine, I know how disappointing drs can be at times. I think we have all been there. They seem to make us feel worse sometimes. I know you don't want RP, none of us do, but what we want is to know WHAT we have and get a name put to it. I don't know why drs. still can't get it through their heads that we don't have to have a red ear and our sed rates can be normal.!!! That makes me so mad. I hate to keep bringing it up, but I'm going to see if the heart dr can write something to the fact that my aortic valve has been having damage done to it since before 1995 and I had NO symptoms of RP. He told me the damage was all from RP and not the normal damage he usually sees. I hope his story is the same when I see him on Monday. Please know we are all with you in spirit. Wish we could all be there in person with you. LOL Boy would we make the drs. nervous. LOL Keep your chin up and know there are plenty of us here for you. AND like I said, you will always be part of the RP family no matter what. hugs and more hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Here i am getting frustrated...has any of you every been frustrated with doctors?@#?!? Dr. Michet says my symptoms are atypical of RP...no ear flares, blood work normal, 6 months a long time for a flare. ENT says my larnyx looks normal and agrees with rheumy, maybe i am having muscle spasm/inflamation around throat area. Next step a PH monitor to wear thru my nose down to the spincter muscle at the end of my esophogus ( a mere 24 hours!). I am to eat and act normally (yea, right). This is to measure how well my meds are working (if) for acid reflux (GERD). You all know, of course, i don't want RP, so this is good news, but sure don't want o get out of here with " nothing' " and no treatment as a diagnosis. Sunshine not feeling very sunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 --- sunshinemirage wrote: > Here i am getting frustrated...has any of you every > been frustrated with > doctors?@#?!? Dr. Michet says my symptoms are > atypical of RP...no ear > flares, blood work normal, 6 months a long time for > a flare. ENT says > my larnyx looks normal and agrees with rheumy, maybe > i am having > muscle spasm/inflamation around throat area. Next > step a PH monitor > to wear thru my nose down to the spincter muscle at > the end of my > esophogus ( a mere 24 hours!). I am to eat and act > normally (yea, > right). This is to measure how well my meds are > working (if) for acid > reflux (GERD). You all know, of course, i don't > want RP, so this is good > news, but sure don't want o get out of here with > " nothing' " and no > treatment as a diagnosis. > Sunshine not feeling very sunny > Dear Sunshine, > I think we can all relate to that frustration!! But at least they are not just kissing you off and treating you like a hyochondriac - they are looking for answers. The thing through your nose does NOT sound pleasant, lets hope it will give som answers. Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 --y'all make me laugh ;0 great meds!!!! I came back to say i was feeling better...can't keep me down too long, just ask my husband and daughter how i DRIVE them! I have thought of some more questions and answers during my short-lived depression, and yes Liz and at least we are on the right quest....but it would be grand if y'all could be here!!!!!wouldn't it be great to make the docs a little nervous for a change? seems like you are getting better and better with each day...you go girl! Thoughts and prayer with y'all, Sunshine P.S. this tube down my esophagus? well let's just say i've done more fun things! Eat, drink and be merry In Rpolychondritis@y..., RCColloran@a... wrote: > Sunshine, I know how disappointing drs can be at times. I think we have all > been there. They seem to make us feel worse sometimes. I know you don't > want RP, none of us do, but what we want is to know WHAT we have and get a > name put to it. > > I don't know why drs. still can't get it through their heads that we don't > have to have a red ear and our sed rates can be normal.!!! That makes me so > mad. > > I hate to keep bringing it up, but I'm going to see if the heart dr can write > something to the fact that my aortic valve has been having damage done to it > since before 1995 and I had NO symptoms of RP. He told me the damage was all > from RP and not the normal damage he usually sees. I hope his story is the > same when I see him on Monday. > > Please know we are all with you in spirit. Wish we could all be there in > person with you. LOL Boy would we make the drs. nervous. LOL > > Keep your chin up and know there are plenty of us here for you. AND like I > said, you will always be part of the RP family no matter what. > > hugs and more hugs > Quote Link to comment Share on other sites More sharing options...
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