Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Kathleen, I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. Are you seeing a Rheumotologist? Hugs, Sandy Hi all, I haven't received a dx yet, but believe that I do have RP. I have had terrible pain in my throat that is deep and aching. Not like the usual sore throat from a virus or something. Sometimes it is so bad I just want to cry. I can't lay on my stomach because it makes my head turn and I feel like I am going to choke and it makes my throat pain much worse. I have had costochondritis off and on for years. I also have joint pain that was written off as fibromyalgia. Now my ears have begun to hurt. The insides itch terribly sometimes and then the pain sets in. I was told that it is allergy... Has anyone had similar experiences? Have had all the usual workups-- no ANA, sed rate usually normal, no reflux (although my esophagus and trachea were bright red on laryngoscope...) Was told by the GI doctor that I had irritable bowel of the throat! Was told by the ENT that he had no clue. Was told by my previous GP that I was suffering from anxiety... Any comments would be appreciated. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Kathleen, I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. Are you seeing a Rheumotologist? Hugs, Sandy Hi all, I haven't received a dx yet, but believe that I do have RP. I have had terrible pain in my throat that is deep and aching. Not like the usual sore throat from a virus or something. Sometimes it is so bad I just want to cry. I can't lay on my stomach because it makes my head turn and I feel like I am going to choke and it makes my throat pain much worse. I have had costochondritis off and on for years. I also have joint pain that was written off as fibromyalgia. Now my ears have begun to hurt. The insides itch terribly sometimes and then the pain sets in. I was told that it is allergy... Has anyone had similar experiences? Have had all the usual workups-- no ANA, sed rate usually normal, no reflux (although my esophagus and trachea were bright red on laryngoscope...) Was told by the GI doctor that I had irritable bowel of the throat! Was told by the ENT that he had no clue. Was told by my previous GP that I was suffering from anxiety... Any comments would be appreciated. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen Re: Symptoms > Hi Kathleen, > > I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. > Are you seeing a Rheumotologist? > > Hugs, > Sandy > Hi all, > > I haven't received a dx yet, but believe that I do have RP. I have > had terrible pain in my throat that is deep and aching. Not like the > usual sore throat from a virus or something. Sometimes it is so bad > I just want to cry. I can't lay on my stomach because it makes my > head turn and I feel like I am going to choke and it makes my throat > pain much worse. I have had costochondritis off and on for years. I > also have joint pain that was written off as fibromyalgia. Now my > ears have begun to hurt. The insides itch terribly sometimes and > then the pain sets in. I was told that it is allergy... Has anyone > had similar experiences? Have had all the usual workups-- no ANA, > sed rate usually normal, no reflux (although my esophagus and trachea > were bright red on laryngoscope...) Was told by the GI doctor that I > had irritable bowel of the throat! Was told by the ENT that he had > no clue. Was told by my previous GP that I was suffering from > anxiety... Any comments would be appreciated. > > Kathleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen Re: Symptoms > Hi Kathleen, > > I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. > Are you seeing a Rheumotologist? > > Hugs, > Sandy > Hi all, > > I haven't received a dx yet, but believe that I do have RP. I have > had terrible pain in my throat that is deep and aching. Not like the > usual sore throat from a virus or something. Sometimes it is so bad > I just want to cry. I can't lay on my stomach because it makes my > head turn and I feel like I am going to choke and it makes my throat > pain much worse. I have had costochondritis off and on for years. I > also have joint pain that was written off as fibromyalgia. Now my > ears have begun to hurt. The insides itch terribly sometimes and > then the pain sets in. I was told that it is allergy... Has anyone > had similar experiences? Have had all the usual workups-- no ANA, > sed rate usually normal, no reflux (although my esophagus and trachea > were bright red on laryngoscope...) Was told by the GI doctor that I > had irritable bowel of the throat! Was told by the ENT that he had > no clue. Was told by my previous GP that I was suffering from > anxiety... Any comments would be appreciated. > > Kathleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Kathleen, I did the same thing when I was Dx., went to the library and found no info at all. It is reassuring to at least have a diagnosis. Hope you find a good Rheumy who has some experience with RP. My Rp. affects my nose, ears ribs, joints and throat. I've gone through trials of several meds and am now on Cytoxan which seems to be helping. Sandy Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen Re: Symptoms > Hi Kathleen, > > I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. > Are you seeing a Rheumotologist? > > Hugs, > Sandy > Hi all, > > I haven't received a dx yet, but believe that I do have RP. I have > had terrible pain in my throat that is deep and aching. Not like the > usual sore throat from a virus or something. Sometimes it is so bad > I just want to cry. I can't lay on my stomach because it makes my > head turn and I feel like I am going to choke and it makes my throat > pain much worse. I have had costochondritis off and on for years. I > also have joint pain that was written off as fibromyalgia. Now my > ears have begun to hurt. The insides itch terribly sometimes and > then the pain sets in. I was told that it is allergy... Has anyone > had similar experiences? Have had all the usual workups-- no ANA, > sed rate usually normal, no reflux (although my esophagus and trachea > were bright red on laryngoscope...) Was told by the GI doctor that I > had irritable bowel of the throat! Was told by the ENT that he had > no clue. Was told by my previous GP that I was suffering from > anxiety... Any comments would be appreciated. > > Kathleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Kathleen, I did the same thing when I was Dx., went to the library and found no info at all. It is reassuring to at least have a diagnosis. Hope you find a good Rheumy who has some experience with RP. My Rp. affects my nose, ears ribs, joints and throat. I've gone through trials of several meds and am now on Cytoxan which seems to be helping. Sandy Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen Re: Symptoms > Hi Kathleen, > > I get the pain in my throat and if I turn my head a certain way I feel like I can't breath. Also have joint pain that my doctors attributed to Fibromyalgia for ten years. I sometimes get an itchy feeling in my ears before they flare. My sed rate has always been normal. > Are you seeing a Rheumotologist? > > Hugs, > Sandy > Hi all, > > I haven't received a dx yet, but believe that I do have RP. I have > had terrible pain in my throat that is deep and aching. Not like the > usual sore throat from a virus or something. Sometimes it is so bad > I just want to cry. I can't lay on my stomach because it makes my > head turn and I feel like I am going to choke and it makes my throat > pain much worse. I have had costochondritis off and on for years. I > also have joint pain that was written off as fibromyalgia. Now my > ears have begun to hurt. The insides itch terribly sometimes and > then the pain sets in. I was told that it is allergy... Has anyone > had similar experiences? Have had all the usual workups-- no ANA, > sed rate usually normal, no reflux (although my esophagus and trachea > were bright red on laryngoscope...) Was told by the GI doctor that I > had irritable bowel of the throat! Was told by the ENT that he had > no clue. Was told by my previous GP that I was suffering from > anxiety... Any comments would be appreciated. > > Kathleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Kathleen, I also looked in the library and every bookstore and found nothing.. at the time I had no computer... This group has been a God send. I really admire you for doing home schooling... It takes a special person to do it. I have 3 grown daughters and don't know if I could have done it. LOL My sister in law has a corgi and it is absolutely wonderful.. What wonderful dogs they are.. I haven't had a flare in quite a while, but i mostly affects my ribs and ears. Sometimes my nose.. I find that I am hoarse more now than I was before.. I will see an ENT in Dec. so will find something out then. The Rp did affect my heart valves, but I think because of the delayed dx that was the problem.. Otherwise I'm doing pretty well. Don't let some of the stuff you read scare you.. Boy it sure did me at first.. You will see that most of us are doing well. RP is controlable....remember that.. AND there have been some in the group that have been in remission. That is the goal for the RP Foundation..... to make the public and medical professionals aware of RP and someday find a cure. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 In a message dated 10/29/01 2:33:43 PM Pacific Standard Time, kath1@... writes: << have had costochondritis off and on for years. I also have joint pain that was written off as fibromyalgia. >> Kathleen, I have had the same symptoms for years... I'm glad that you found the group. You will find out sooo much and will be able to share with your doctors... (If they are one of the drs. that are willing to read what you bring in, I hope so) I didn't have my first ear flare until 1998 and wasnt' dx til 1999. I have been on prednisone ever since that time. They started me on the medral pack..and then I went to 80mg of pred. I added vioxx to that and couldn't get the pred down below 30mg so started on methotrexate. Was on that for a year and still couldn't get my pred down.. so switched to Imuran and it made me TOO sick. Right now I am only on Biaxin and pred and have my pred down to 8mg... I go to see a new rheumy at Stanford on the 19th so will see what he has to say. Didn't mean to ramble on...Again welcome to the group and keep asking those questions.. We all learn by them. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Kathleen, I also looked in the library and every bookstore and found nothing.. at the time I had no computer... This group has been a God send. I really admire you for doing home schooling... It takes a special person to do it. I have 3 grown daughters and don't know if I could have done it. LOL My sister in law has a corgi and it is absolutely wonderful.. What wonderful dogs they are.. I haven't had a flare in quite a while, but i mostly affects my ribs and ears. Sometimes my nose.. I find that I am hoarse more now than I was before.. I will see an ENT in Dec. so will find something out then. The Rp did affect my heart valves, but I think because of the delayed dx that was the problem.. Otherwise I'm doing pretty well. Don't let some of the stuff you read scare you.. Boy it sure did me at first.. You will see that most of us are doing well. RP is controlable....remember that.. AND there have been some in the group that have been in remission. That is the goal for the RP Foundation..... to make the public and medical professionals aware of RP and someday find a cure. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 In a message dated 10/29/01 2:33:43 PM Pacific Standard Time, kath1@... writes: << have had costochondritis off and on for years. I also have joint pain that was written off as fibromyalgia. >> Kathleen, I have had the same symptoms for years... I'm glad that you found the group. You will find out sooo much and will be able to share with your doctors... (If they are one of the drs. that are willing to read what you bring in, I hope so) I didn't have my first ear flare until 1998 and wasnt' dx til 1999. I have been on prednisone ever since that time. They started me on the medral pack..and then I went to 80mg of pred. I added vioxx to that and couldn't get the pred down below 30mg so started on methotrexate. Was on that for a year and still couldn't get my pred down.. so switched to Imuran and it made me TOO sick. Right now I am only on Biaxin and pred and have my pred down to 8mg... I go to see a new rheumy at Stanford on the 19th so will see what he has to say. Didn't mean to ramble on...Again welcome to the group and keep asking those questions.. We all learn by them. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hi , Glad to hear you had such an insightful time at the Chicago conference. I think your observations on MSA symptoms are good! I especially empathize with the comment you made about the MD's and how they approach the dx of MSA based on the symptoms. I really think that this disease is SO problematic for the MD's because of the inability for any of them to give a definitive dx " pre " mortem. The best they can do right now is classify it as " possible " or " probable " When Jeff was going through the whole process of obtaining a diagnosis, his doctors were like chickens with their heads cut off. At first, it was like chasing ghosts. A symptom would appear, mimic a common condition (like Crohn's Disease), tests would be run, and would show " something " . I started to refer to the " somethings " as the ghosts. But that ghost could not give a specific diagnosis. All of Jeff's early symptoms were autonomic in nature, so early suspicions were things like Crohn's disease, carcinomas, pancreatitis...I could go on for a LONG time on this. But it wasn't until he started experiencing some of the PD and neurological symptoms that any type of neurological condition was even considered. And even the " experts " in the field want to pidgeonhole this condition. So when a symptom comes up that doesn't " fit " , it makes them crazy. I think the thing that distinguishes the REALLY good doctors from the others is their ability to admit they don't know everything about MSA, and that it is a condition still under development. The good ones will at least listen to a concensus. Which is why, to make my very long soapbox short, I agree that we should keep our symptom list as updated as possible, and maybe even tak a pool of the percentage of us that are experiencing these symptoms, and maybe even our ages. For instance, the vision problems seem to be common, yet not listed as a significant symptom. Why? Maybe the doctors feel that most MSA patients, being over 60, would have vision difficulties whether they had MSA or not. But if we list that 90% of the MSA patients under 40 have vision problems, it might become more significant. Where am I going with this! I'll just quit while I'm ahead! Quote Link to comment Share on other sites More sharing options...
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