Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Sounds similar to mine. Was on antibiotics for four and a half months. Finally, sent to infectious deasease. They diognosed the problem and prescribed Prednisone at the rate of 40 mlg. Down to thirty ,then twenty, ten, and quit. Noimprovement. Referred to Rheumatoligist. Now taking only 6 ml pr and 200mg dapsone. Have flare ups all the time. Now the surgeon wants to close the biops site. I am a little scared of this. This has been going on since June of 2000. I could tell you all horror stories as to what they put me through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Dear , I can't be of much help to our new member, but it does seem odd that they would run tests AFTER she had been on antibiotics and steriods instead of before she began taking them. The steriods would have already have made the blood tests negative for anything, I would think. Didn't realize there was a test conclusive to diagnosing RP. I hope she can find somebody who can help her. During my flares, I do itch a lot, plus I ache all over. My joints get very painful. It's not unusual to run a temperature during a flare either. I've not had headaches or dizziness with any of my flares though. Marilyn > I have not yet been diagnosed with polychondritis, > only tested. I am trying to find a doctor who > specializes in this disease so I can be properly > diagnosed. I have experienced swelling, burning, pain > in first the left ear and three months later the right > ear. My body experiences extreme flu symptoms with > fevers, aches, dizziness, and extreme headaches. The > test for polychondritis was given after I had received > three days of extreme doses of steriods and > antiabiotics. These doctors had never seen anything > like what I experienced. Do any of these symptoms > sound familiar to you. I have not idea where to do > from here. My ears, nose and the scalp constantly > itch. After each episode the side of my face and ear > have peeled as if they was extremely sunburned. > I would appreciate your response. Thanks!! > Desperately in Montgomery. > > > > > > > > > > > ===== > Have a great day! > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Dear , I can't be of much help to our new member, but it does seem odd that they would run tests AFTER she had been on antibiotics and steriods instead of before she began taking them. The steriods would have already have made the blood tests negative for anything, I would think. Didn't realize there was a test conclusive to diagnosing RP. I hope she can find somebody who can help her. During my flares, I do itch a lot, plus I ache all over. My joints get very painful. It's not unusual to run a temperature during a flare either. I've not had headaches or dizziness with any of my flares though. Marilyn > I have not yet been diagnosed with polychondritis, > only tested. I am trying to find a doctor who > specializes in this disease so I can be properly > diagnosed. I have experienced swelling, burning, pain > in first the left ear and three months later the right > ear. My body experiences extreme flu symptoms with > fevers, aches, dizziness, and extreme headaches. The > test for polychondritis was given after I had received > three days of extreme doses of steriods and > antiabiotics. These doctors had never seen anything > like what I experienced. Do any of these symptoms > sound familiar to you. I have not idea where to do > from here. My ears, nose and the scalp constantly > itch. After each episode the side of my face and ear > have peeled as if they was extremely sunburned. > I would appreciate your response. Thanks!! > Desperately in Montgomery. > > > > > > > > > > > ===== > Have a great day! > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Dear , I can't be of much help to our new member, but it does seem odd that they would run tests AFTER she had been on antibiotics and steriods instead of before she began taking them. The steriods would have already have made the blood tests negative for anything, I would think. Didn't realize there was a test conclusive to diagnosing RP. I hope she can find somebody who can help her. During my flares, I do itch a lot, plus I ache all over. My joints get very painful. It's not unusual to run a temperature during a flare either. I've not had headaches or dizziness with any of my flares though. Marilyn > I have not yet been diagnosed with polychondritis, > only tested. I am trying to find a doctor who > specializes in this disease so I can be properly > diagnosed. I have experienced swelling, burning, pain > in first the left ear and three months later the right > ear. My body experiences extreme flu symptoms with > fevers, aches, dizziness, and extreme headaches. The > test for polychondritis was given after I had received > three days of extreme doses of steriods and > antiabiotics. These doctors had never seen anything > like what I experienced. Do any of these symptoms > sound familiar to you. I have not idea where to do > from here. My ears, nose and the scalp constantly > itch. After each episode the side of my face and ear > have peeled as if they was extremely sunburned. > I would appreciate your response. Thanks!! > Desperately in Montgomery. > > > > > > > > > > > ===== > Have a great day! > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 In a message dated 4/11/01 7:50:57 PM Central Daylight Time, vrhgram@... writes: << I could tell you all horror stories as to what they put me through. >> And we can tell you a few also! This is very common what you went through with the Dr's most of us have also been down the road from hell. Where do you live? kp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Welcome to the group, Don't know your name but hope to soon! Glad you found us but so sorry that you have RP! Please tell us a little about yourself! We are all here to help or answer questions that you might ask! YOu have just found the greatest group of people that you will ever want to meet! Please don't be afraid to say what is on your mind. We are all her and want to help. My name is Glenda and I have had RP for over 7yrs. I am a mother of two grown children and am raising my 5yr granddaughter. I have been married for 27yrs and I work a full time job. Oh yah I live in Oregon. Take care and welcome! Lots of love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 I know what your saying about horror stories, no one seems to know squat. I've been sick since Christmas, first a virus, then sinus infections, 3 antibiotics, Prednisone, two rounds, nagging cough for months, lesions on arms and legs. Now fibro and maybe skin lupus. Good luck to you....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 I know what your saying about horror stories, no one seems to know squat. I've been sick since Christmas, first a virus, then sinus infections, 3 antibiotics, Prednisone, two rounds, nagging cough for months, lesions on arms and legs. Now fibro and maybe skin lupus. Good luck to you....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 I know what your saying about horror stories, no one seems to know squat. I've been sick since Christmas, first a virus, then sinus infections, 3 antibiotics, Prednisone, two rounds, nagging cough for months, lesions on arms and legs. Now fibro and maybe skin lupus. Good luck to you....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 In a message dated 4/12/01 9:51:49 AM Central Daylight Time, rsmit103@... writes: << My blood test was negative for this disease - so, of course we are just waiting for another flareup. I need some guidance as to what I should do. >> Hi again and welcome, there is no " blood " test for RP, but they can draw a C-Reactive Protein and also Western Sed draw, which can tell the Dr's the measurement of inflammation in the blood and this is how the follow the disorder, do not worry about all blood work being Neg, when you flair go in ASAP for these blood draws. There is also a biopy they can take (a bit painful though) but there is NO reason for them to do this if they are 100% sure you have the disorder. can tell you more about all of this I am brain dead today! KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 In a message dated 4/12/01 9:51:49 AM Central Daylight Time, rsmit103@... writes: << My blood test was negative for this disease - so, of course we are just waiting for another flareup. I need some guidance as to what I should do. >> Hi again and welcome, there is no " blood " test for RP, but they can draw a C-Reactive Protein and also Western Sed draw, which can tell the Dr's the measurement of inflammation in the blood and this is how the follow the disorder, do not worry about all blood work being Neg, when you flair go in ASAP for these blood draws. There is also a biopy they can take (a bit painful though) but there is NO reason for them to do this if they are 100% sure you have the disorder. can tell you more about all of this I am brain dead today! KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 In a message dated 4/12/01 9:51:49 AM Central Daylight Time, rsmit103@... writes: << My blood test was negative for this disease - so, of course we are just waiting for another flareup. I need some guidance as to what I should do. >> Hi again and welcome, there is no " blood " test for RP, but they can draw a C-Reactive Protein and also Western Sed draw, which can tell the Dr's the measurement of inflammation in the blood and this is how the follow the disorder, do not worry about all blood work being Neg, when you flair go in ASAP for these blood draws. There is also a biopy they can take (a bit painful though) but there is NO reason for them to do this if they are 100% sure you have the disorder. can tell you more about all of this I am brain dead today! KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Hi , Did this come from Alabama????? Lu I have not yet been diagnosed with polychondritis, only tested. I am trying to find a doctor who specializes in this disease so I can be properly diagnosed. I have experienced swelling, burning, pain in first the left ear and three months later the right ear. My body experiences extreme flu symptoms with fevers, aches, dizziness, and extreme headaches. The test for polychondritis was given after I had received three days of extreme doses of steriods and antiabiotics. These doctors had never seen anything like what I experienced. Do any of these symptoms sound familiar to you. I have not idea where to do from here. My ears, nose and the scalp constantly itch. After each episode the side of my face and ear have peeled as if they was extremely sunburned. I would appreciate your response. Thanks!! Desperately in Montgomery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Hi , Did this come from Alabama????? Lu I have not yet been diagnosed with polychondritis, only tested. I am trying to find a doctor who specializes in this disease so I can be properly diagnosed. I have experienced swelling, burning, pain in first the left ear and three months later the right ear. My body experiences extreme flu symptoms with fevers, aches, dizziness, and extreme headaches. The test for polychondritis was given after I had received three days of extreme doses of steriods and antiabiotics. These doctors had never seen anything like what I experienced. Do any of these symptoms sound familiar to you. I have not idea where to do from here. My ears, nose and the scalp constantly itch. After each episode the side of my face and ear have peeled as if they was extremely sunburned. I would appreciate your response. Thanks!! Desperately in Montgomery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Rita, do you have a good doc in Montgomery? I think there is one in Birmingham, in case you don't. If you need let me know and I will try to find out more re: B'ham (UAB) Love and God Bless, Jo Re: new member needs help--- Idigflower@... wrote:> In a message dated 4/11/01 7:50:57 PM Central> Daylight Time, vrhgram@... > writes:> > << I could tell you all horror stories as to what > they put me through. >>> > > And we can tell you a few also! This is very common> what you went through > with the Dr's most of us have also been down the> road from hell. Where do > you live?> > kp> Hello,My name is Rita. I live in Montgomery AL. I e-mailedyour group yesterday needing as much info as I canget. My blood test was negative for this disease -so, of course we are just waiting for another flareup.I need some guidance as to what I should do.Thanks!=====Have a great day!Rita__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Rita, Lu is a nurse and veeeeerrry knowledgeable of most anything you need to know. Besides, she is a most wonderful person. Hope you find help soon. Please don't get discouraged. That's a joke, isn't it? Love ya, Jo Re: new member needs help--- Lu1953@... wrote:> Hi ,> Did this come from Alabama?????> Lu> > > > I have not yet been diagnosed with polychondritis,> > only tested. I am trying to find a doctor who> > specializes in this disease so I can be properly> > diagnosed. I have experienced swelling, burning,> pain> > in first the left ear and three months later the> right> > ear. My body experiences extreme flu symptoms> with> > fevers, aches, dizziness, and extreme headaches. > The> > test for polychondritis was given after I had> received> > three days of extreme doses of steriods and> > antiabiotics. These doctors had never seen> anything> > like what I experienced. Do any of these symptoms> > sound familiar to you. I have not idea where to> do> > from here. My ears, nose and the scalp constantly> > itch. After each episode the side of my face and> ear> > have peeled as if they was extremely sunburned.> > I would appreciate your response. Thanks!! > > Desperately in Montgomery. Lu,My name is Rita. yes I do live in Montgomery. Iwould appreciate any help you can give me.Rita> > > > > > > > =====Have a great day!Rita__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 --- Idigflower@... wrote: > In a message dated 4/11/01 7:50:57 PM Central > Daylight Time, vrhgram@... > writes: > > << I could tell you all horror stories as to what > they put me through. >> > > > And we can tell you a few also! This is very common > what you went through > with the Dr's most of us have also been down the > road from hell. Where do > you live? > > kp > Hello, My name is Rita. I live in Montgomery AL. I e-mailed your group yesterday needing as much info as I can get. My blood test was negative for this disease - so, of course we are just waiting for another flareup. I need some guidance as to what I should do. Thanks! ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 > > Hi Rita, Welcome to the RP group. I was DX. in May of 1999 but had symptoms for 10 years before DX. What blood tests did you have done? Just wanted to tell you my blood work is normal and my Sed. Rate is always within normal range. You can have RP. and still have a normal Sed. Rate. Are you seeing a Rheumotologist that has experience with RP.? > > > > Hello, > > My name is Rita. I live in Montgomery AL. I e-mailed > your group yesterday needing as much info as I can > get. My blood test was negative for this disease - > so, of course we are just waiting for another flareup. > I need some guidance as to what I should do. > > Thanks! > > > ===== > Have a great day! > > Rita > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 > > Hi Rita, Welcome to the RP group. I was DX. in May of 1999 but had symptoms for 10 years before DX. What blood tests did you have done? Just wanted to tell you my blood work is normal and my Sed. Rate is always within normal range. You can have RP. and still have a normal Sed. Rate. Are you seeing a Rheumotologist that has experience with RP.? > > > > Hello, > > My name is Rita. I live in Montgomery AL. I e-mailed > your group yesterday needing as much info as I can > get. My blood test was negative for this disease - > so, of course we are just waiting for another flareup. > I need some guidance as to what I should do. > > Thanks! > > > ===== > Have a great day! > > Rita > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 > > Hi Rita, Welcome to the RP group. I was DX. in May of 1999 but had symptoms for 10 years before DX. What blood tests did you have done? Just wanted to tell you my blood work is normal and my Sed. Rate is always within normal range. You can have RP. and still have a normal Sed. Rate. Are you seeing a Rheumotologist that has experience with RP.? > > > > Hello, > > My name is Rita. I live in Montgomery AL. I e-mailed > your group yesterday needing as much info as I can > get. My blood test was negative for this disease - > so, of course we are just waiting for another flareup. > I need some guidance as to what I should do. > > Thanks! > > > ===== > Have a great day! > > Rita > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 --- Lu1953@... wrote: > Hi , > Did this come from Alabama????? > Lu > > > > I have not yet been diagnosed with polychondritis, > > only tested. I am trying to find a doctor who > > specializes in this disease so I can be properly > > diagnosed. I have experienced swelling, burning, > pain > > in first the left ear and three months later the > right > > ear. My body experiences extreme flu symptoms > with > > fevers, aches, dizziness, and extreme headaches. > The > > test for polychondritis was given after I had > received > > three days of extreme doses of steriods and > > antiabiotics. These doctors had never seen > anything > > like what I experienced. Do any of these symptoms > > sound familiar to you. I have not idea where to > do > > from here. My ears, nose and the scalp constantly > > itch. After each episode the side of my face and > ear > > have peeled as if they was extremely sunburned. > > I would appreciate your response. Thanks!! > > Desperately in Montgomery. Lu, My name is Rita. yes I do live in Montgomery. I would appreciate any help you can give me. Rita > > > > > > > > ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 --- Lu1953@... wrote: > Hi , > Did this come from Alabama????? > Lu > > > > I have not yet been diagnosed with polychondritis, > > only tested. I am trying to find a doctor who > > specializes in this disease so I can be properly > > diagnosed. I have experienced swelling, burning, > pain > > in first the left ear and three months later the > right > > ear. My body experiences extreme flu symptoms > with > > fevers, aches, dizziness, and extreme headaches. > The > > test for polychondritis was given after I had > received > > three days of extreme doses of steriods and > > antiabiotics. These doctors had never seen > anything > > like what I experienced. Do any of these symptoms > > sound familiar to you. I have not idea where to > do > > from here. My ears, nose and the scalp constantly > > itch. After each episode the side of my face and > ear > > have peeled as if they was extremely sunburned. > > I would appreciate your response. Thanks!! > > Desperately in Montgomery. Lu, My name is Rita. yes I do live in Montgomery. I would appreciate any help you can give me. Rita > > > > > > > > ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 --- Lu1953@... wrote: > Hi , > Did this come from Alabama????? > Lu > > > > I have not yet been diagnosed with polychondritis, > > only tested. I am trying to find a doctor who > > specializes in this disease so I can be properly > > diagnosed. I have experienced swelling, burning, > pain > > in first the left ear and three months later the > right > > ear. My body experiences extreme flu symptoms > with > > fevers, aches, dizziness, and extreme headaches. > The > > test for polychondritis was given after I had > received > > three days of extreme doses of steriods and > > antiabiotics. These doctors had never seen > anything > > like what I experienced. Do any of these symptoms > > sound familiar to you. I have not idea where to > do > > from here. My ears, nose and the scalp constantly > > itch. After each episode the side of my face and > ear > > have peeled as if they was extremely sunburned. > > I would appreciate your response. Thanks!! > > Desperately in Montgomery. Lu, My name is Rita. yes I do live in Montgomery. I would appreciate any help you can give me. Rita > > > > > > > > ===== Have a great day! Rita __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 My major symptoms are my ears,my eyes (iritis), and the dr is to check my trachea next week. In the same problem in my joints, Knees, hips, shoulders, elbows and right foot are all affected and last but not least, my spine can get pretty crochety. Other than that, I'm fine. Hope this helps. Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 My major symptoms are my ears,my eyes (iritis), and the dr is to check my trachea next week. In the same problem in my joints, Knees, hips, shoulders, elbows and right foot are all affected and last but not least, my spine can get pretty crochety. Other than that, I'm fine. Hope this helps. Judy O Quote Link to comment Share on other sites More sharing options...
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