Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 In a message dated 6/8/01 8:57:25 AM Pacific Daylight Time, rsmit103@... writes: << I was diagnosed on Tuesday with RP, but I heard from my blood tests today and they were normal. So, that is some good news. >> Rita, guess we are all having problems with our mail.. At least they aren't just picking on a few. LOL So glad that your blood tests came back normal, that is a good sign. I just got a call from my dr. My blood test were all normal and so was my back xray... He tested for diabetes, thyroid, Lupus panel and some other stuff for mixed connective tissue disease. So...guess I'm in good shape too. I'm off now to the foot doctor. Will update all when I get home. Hope you are having a good day and Rita, am really happy you have found this group. What are your symtoms and are you on any meds right now? hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 In a message dated 6/13/01 3:17:42 PM Pacific Daylight Time, rsmit103@... writes: << FLARING OF THE EARS, HEADACHES, WHELPS IN THE HAIR AND EXTREME BURNING OF THE SKIN ALONG THE HAIRLINE, EARS, FOREHEAD, EXTREMELY TIRED (SOMEDAYS JUST CANNOT EVEN GET OUT OF BED). WHEN I FLARE I HAVE EXTREME CHILLS AND BODY ACHES (LIKE THE FLU) BUT NO FEVER. AFTER THE SWELLING AND HEAT GOES OUT OF MY EARS AND FACE AND HAIR MY SKIN PEELS AS IT SUFFERED A THIRD DEGREE SUNBURN. MY DR PUT ME ON 5MG PED AND .06 MG OF COLCHICINE TWICE A DAY. >> Boy Rita sounds like you have it all and then some.!!! If I were you, I would check with my doctor... You shouldn't be in so much pain and the pred should cut the flare... I would think a higher dose of pred would help. Please call if you are no better... You must stop a flare as soon as possible. In my opinon sounds like too small a dose of pred, but please check with your doctor. When I flare I only have ear, nose and rib involvement. I know there are some who have the peeling of the skin. Hope they get back to you, they could answer that better than I. I have never had that happen. I sure hope you get to feeling well really soon. I will keep you in my thoughts... Please ask all the questions you need and post whenever you want. We are all here for you. Glad to have you in the group hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Hi, I may haved missed something here. If all your tests came back normal why does your doctor think you have RP. It just seems unusual for me. I have only been back in the group for a short time so you may have a history I'm not aware of. Ears, nose, etc. Is your ANA okay, your SED rates and all those other screwy tests they do? Just curious...Love, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 --- RCColloran@... wrote: > In a message dated 6/8/01 8:57:25 AM Pacific > Daylight Time, > rsmit103@... writes: > > << I was diagnosed on Tuesday with RP, but I > heard from my blood tests today and they were > normal. > So, that is some good news. >> > Rita, guess we are all having problems with our > mail.. At least they aren't > just picking on a few. LOL > > So glad that your blood tests came back normal, that > is a good sign. I just > got a call from my dr. My blood test were all > normal and so was my back > xray... He tested for diabetes, thyroid, Lupus > panel and some other stuff > for mixed connective tissue disease. So...guess I'm > in good shape too. I'm > off now to the foot doctor. Will update all when I > get home. > > Hope you are having a good day and Rita, am really > happy you have found this > group. What are your symtoms and are you on any > meds right now? > > hugs > CLAUDIA, FLARING OF THE EARS, HEADACHES, WHELPS IN THE HAIR AND EXTREME BURNING OF THE SKIN ALONG THE HAIRLINE, EARS, FOREHEAD, EXTREMELY TIRED (SOMEDAYS JUST CANNOT EVEN GET OUT OF BED). WHEN I FLARE I HAVE EXTREME CHILLS AND BODY ACHES (LIKE THE FLU) BUT NO FEVER. AFTER THE SWELLING AND HEAT GOES OUT OF MY EARS AND FACE AND HAIR MY SKIN PEELS AS IT SUFFERED A THIRD DEGREE SUNBURN. MY DR PUT ME ON 5MG PED AND .06 MG OF COLCHICINE TWICE A DAY. LET ME KNOW HOW YOU ARE DOING AND WHAT YOUR SYMPTOMS ARE. SO GLAD YOUR TEST WERE NORMAL. I DON'T KNOW WHAT TO EXPECT. I AM JUST TAKING IT ONE DAY AT AT A TIME AND HOPING FOR THE BEST. ALL OF YOU HAVE BEEN WONDERFUL. WOULD LIKE TO BE WITH SOME OF YOU IN SEPTEMBER BUT NOT SURE. RITA S > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Sue I can have totaly normal blood tests and have ears the size of Dumbo, and throat swelling and nose too. BLood test are not always realiable. There is not one test that can say you have RP, A lot of it is based on symptoms. dawn --- grandm4@... wrote: > Hi, I may haved missed something here. If all your > tests came back normal why > does your doctor think you have RP. It just seems > unusual for me. I have only > been back in the group for a short time so you may > have a history I'm not > aware of. Ears, nose, etc. Is your ANA okay, your > SED rates and all those > other screwy tests they do? Just curious...Love, Sue > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Dear Dawn, I agree, all the blood work etc. tells us that the combination of all the different tests and symptoms can give us a diagnosis. Nothing is in stone...Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Rita ,What does your coc have you on colchcine for . Sherry --- RCColloran@... wrote: > In a message dated 6/13/01 3:17:42 PM Pacific > Daylight Time, > rsmit103@... writes: > > << FLARING OF THE EARS, HEADACHES, WHELPS IN THE > HAIR AND > EXTREME BURNING OF THE SKIN ALONG THE HAIRLINE, > EARS, > FOREHEAD, EXTREMELY TIRED (SOMEDAYS JUST CANNOT > EVEN > GET OUT OF BED). WHEN I FLARE I HAVE EXTREME > CHILLS > AND BODY ACHES (LIKE THE FLU) BUT NO FEVER. AFTER > THE > SWELLING AND HEAT GOES OUT OF MY EARS AND FACE AND > HAIR MY SKIN PEELS AS IT SUFFERED A THIRD DEGREE > SUNBURN. > MY DR PUT ME ON 5MG PED AND .06 MG OF COLCHICINE > TWICE > A DAY. > >> > > Boy Rita sounds like you have it all and then > some.!!! If I were you, I > would check with my doctor... You shouldn't be in so > much pain and the pred > should cut the flare... I would think a higher dose > of pred would help. > Please call if you are no better... You must stop a > flare as soon as > possible. In my opinon sounds like too small a dose > of pred, but please > check with your doctor. > > When I flare I only have ear, nose and rib > involvement. I know there are > some who have the peeling of the skin. Hope they > get back to you, they could > answer that better than I. I have never had that > happen. > > I sure hope you get to feeling well really soon. I > will keep you in my > thoughts... Please ask all the questions you need > and post whenever you want. > We are all here for you. Glad to have you in the > group > > hugs > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 --- Sherry Shepherd sherry_24230_2000@...> wrote: > Rita ,What does your coc have you on colchcine for . > Sherry > --- RCColloran@... wrote: > > In a message dated 6/13/01 3:17:42 PM Pacific > > Daylight Time, > > rsmit103@... writes: > > > > << FLARING OF THE EARS, HEADACHES, WHELPS IN THE > > HAIR AND > > EXTREME BURNING OF THE SKIN ALONG THE HAIRLINE, > > EARS, > > FOREHEAD, EXTREMELY TIRED (SOMEDAYS JUST CANNOT > > EVEN > > GET OUT OF BED). WHEN I FLARE I HAVE EXTREME > > CHILLS > > AND BODY ACHES (LIKE THE FLU) BUT NO FEVER. > AFTER > > THE > > SWELLING AND HEAT GOES OUT OF MY EARS AND FACE > AND > > HAIR MY SKIN PEELS AS IT SUFFERED A THIRD DEGREE > > SUNBURN. > > MY DR PUT ME ON 5MG PED AND .06 MG OF COLCHICINE > > TWICE > > A DAY. > > >> > > > > Boy Rita sounds like you have it all and then > > some.!!! If I were you, I > > would check with my doctor... You shouldn't be in > so > > much pain and the pred > > should cut the flare... I would think a higher > dose > > of pred would help. > > Please call if you are no better... You must stop > a > > flare as soon as > > possible. In my opinon sounds like too small a > dose > > of pred, but please > > check with your doctor. > > > > When I flare I only have ear, nose and rib > > involvement. I know there are > > some who have the peeling of the skin. Hope they > > get back to you, they could > > answer that better than I. I have never had that > > happen. > > > > I sure hope you get to feeling well really soon. > I > > will keep you in my > > thoughts... Please ask all the questions you need > > and post whenever you want. > > We are all here for you. Glad to have you in > the > > group > > > > hugs > > , Thanks for responding, and yes I would like to hear from those who have had peeling of skin after a flare. I do not know why the colchcine except as a preventive. I do back on the 1st of August. I was sort of in short last week when he disgnosed RP and couldn't think. This time I have started a list of questions. I hope you are doing okay. Let me hear from you. The pred seems to be working somewhat - no extreme flares this week (great!!!!). > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 --- grandm4@... wrote: > Hi, I may haved missed something here. If all your > tests came back normal why > does your doctor think you have RP. It just seems > unusual for me. I have only > been back in the group for a short time so you may > have a history I'm not > aware of. Ears, nose, etc. Is your ANA okay, your > SED rates and all those > other screwy tests they do? Just curious...Love, Sue Sue, Sorry I'm so late responding. He diagnosed me on the grounds of he symptoms I am having. He took out a medical journal that had an entire section on RP. In it they said that there was not a test that could be administered for RP, but it had seven symptoms listed and if the patient experienced three or more of these symptoms it was a conclusive diagnoses. I have experience four of these symptoms. My rates were okay, but he wants to redo these tests when I am flaring for a comparison. Have a great day. Hope this finds you feeling well. > > > [Non-text portions of this message have been > removed] > > ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Hi again, can I ask what the four were, and what were the seven? You have come to the right place for information though. We do try to share experiences and information so we can help each other. It's great that it never fails when I get something I go read my mail and sure as " shootin " someone else is going through the same thing. It seems we all have a tendency to get infections, fatigue, and flares. The flares seems to be different when they are there. So my observations for today. Have a wonderful weekend....Love Sue Quote Link to comment Share on other sites More sharing options...
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