Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 In a message dated 01/06/2000 7:39:20 PM Central Standard Time, susuw@... writes: << I refuse to lose anyone on this list to this disease and I want to make damn sure you all know this. I love you all, >> Amen! Gosh , I was sick to hear about Missy, it really hurts to know this illness took her life. Bless her heart, but now she is healed. I love you all too. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 In a message dated 01/06/2000 7:54:22 PM Central Standard Time, susuw@... writes: << This is the exact reason I wasn't going to post about Missy, Jo. I don't want you to be scared. I want you to remember what I said and take action against it ever happening to you or the one you love. Don't let RP scare you. Fight it! Fight like hell to win this war against it and yes, it is a battle and one I absolutely refuse to lose or let any of you lose. >> It still scares the sh-t out of me....More so tonight, because i don't feel good. I think I will just go to bed now...Take care everyone...I love you all Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 This is the exact reason I wasn't going to post about Missy, Jo. I don't want you to be scared. I want you to remember what I said and take action against it ever happening to you or the one you love. Don't let RP scare you. Fight it! Fight like hell to win this war against it and yes, it is a battle and one I absolutely refuse to lose or let any of you lose. Sorry if I sound so grumpy, I just don't want what I said to scare you, but I do want to make sure you all realize what we're up against. BUT, remember too, that there are strength in numbers and we are going to win this one!!!! Love you Jo, >>>>>>>>>>>>>>>>>>>>>>> Thanks, . This scares the heck outta me. I'm so sorry about Missy. She isn't suffering now, tho. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 pass on my sympathy to missey's brother please. She is at peace now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Thanks, . This scares the heck outta me. I'm so sorry about Missy. She isn't suffering now, tho. Jo Missy >A while back, I ask everyone on this list to say a special prayer for a >woman named Missy who was in a coma because her throat had collapsed >suddenly from RP. Last night, I got an email from her brother telling me >that she had passed on to the heavens above. He ask me to thank each and >everyone of you that said prayers for her. >I wasn't even going to tell you all about this, but I truly believe Missy is >sending us a special message here. >PLEASE, if any of you think your throat is feeling different, strange, >having a choking sensation, sore, swollen, anything different from what it >usually feels, call your doctor immediately and demand it be checked. >Missy only had the red ears, but just lately started feeling a strange, >choking feeling in her throat. She was scheduled to see a doctor about it, >but didn't make it in time. Hers was NOT a slow process either. It happened >very quickly, which I know it not the norm, but what is the norm when >dealing with this damn disease? >PLEASE, don't take anything dealing with the throat and RP lightly. Even if >you're not sure, have it checked ASAP!! I refuse to lose anyone on this >list to this disease and I want to make damn sure you all know this. >I love you all, > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 , We will still pray for Missy. Thank you for letting us know. I will pass the info on to Brett. He tends to ignore symptoms. B. At 08:40 PM 1/6/2000 -0500, you wrote: >A while back, I ask everyone on this list to say a special prayer for a >woman named Missy who was in a coma because her throat had collapsed >suddenly from RP. Last night, I got an email from her brother telling me >that she had passed on to the heavens above. He ask me to thank each and >everyone of you that said prayers for her. >I wasn't even going to tell you all about this, but I truly believe Missy is >sending us a special message here. >PLEASE, if any of you think your throat is feeling different, strange, >having a choking sensation, sore, swollen, anything different from what it >usually feels, call your doctor immediately and demand it be checked. >Missy only had the red ears, but just lately started feeling a strange, >choking feeling in her throat. She was scheduled to see a doctor about it, >but didn't make it in time. Hers was NOT a slow process either. It happened >very quickly, which I know it not the norm, but what is the norm when >dealing with this damn disease? >PLEASE, don't take anything dealing with the throat and RP lightly. Even if >you're not sure, have it checked ASAP!! I refuse to lose anyone on this >list to this disease and I want to make damn sure you all know this. >I love you all, > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 It's all kind of scary. My main symptoms have always been tracheal-airway. I had/have chronic epiglottitis and tracheitis and when I have a flare that's where my symptoms are most prominent. This past summer I started having an increased feeling of shortness of breath. Within a month I was experiencing chest pain with the shortness of breath especially with exercise. Well, I told my PCP. He ordered a Cardiopulmonary Stress Test... I think just to humor me... Well... it took 6 weeks before he called me with the results... Not good... It was abnormal and showed restrictive airway disease which was new... significant change since my last Pulmonary Function Test I had done a year prior.... well, it is 4 months later and I'm still waiting for a treatment plan. ... I see Dr Luthra at the MAYO CLINIC and it's taken this long to get an appt.... I find this all very frustrating. So my RP continues to progress when treatment should have been agressive in my eyes.... and the symptoms have progressed, the shortness of breath... has increased... I often wonder what the DOCs would do if they were in our shoes. I'm only 36 years old and have 2 yound children... I want to live a full life and there is no reason why I shouldn't be able to... " They " really need to get their act together... My PCP is good... don't get me wrong. I just don't know why they can't coordinate my care more effectively... quicker when I am having an advance in the disease. It takes forever to get to see Dr. Luthra too. Does anyone have any suggestions? I hear stuff like about Missy... It's really scary... I have been telling the dr's for a while now... SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Please send my condolances on to Missy's family. My thoughts and prayers are with them. SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 1/6/00 7:54:25 PM Central Standard Time, susuw@... writes: << This is the exact reason I wasn't going to post about Missy, Jo. I don't want you to be scared. I want you to remember what I said and take action against it ever happening to you or the one you love. >> , you are right but also this is why we must all go to the BEST doc also right? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Presently... Oxycontin 10mg Q12hrs Prednisone 15mg QD Centrum Vitamin 1 QD Calcium 1000mg QD And I just started taking Vioxx 25mg QD I've had some bad experiences with some of the other drugs.... I tried Methotrexate... I got the injection on Monday... by that evening I was vomiting and continued for 2 days... then I would feel better for the weekend and then I would start the process all over again....until I couldn't do it any more! Then we tried a lower dose of the methothrexate and added Dapsone... which cause " leukemic " changes in my blood... the oncologist stopped the Dapsone and Methotrexate immediately and the abnormal blood cells went away! Next I did the Cyclosporine run... it caused severe uncontrolable hypertension... to the point that 6 weeks after the med was d/c'd I was still severely hypertensive and ended up have a small stroke. I will never take that again! At that point I talk very candidly with my PCP and said... the meds are going to kill me before the RP does so I have opted to use " DRUG THERAPY " very minimally up to this point. I have worked very hard at maintaining a healthy diet and getting at least 1 hour of exercise a day... bicycling and dancing is what I mainly do.... I cycle when possible (weather here doesn't always allow... In fact it's snowing presently) and I take Ballroom dance lessons on Wednesday evening and I go dancing with my honey on Friday and Saturday evening for about 5 hours each night.) I also believe attitude plays an important part in our illness. Realistically though, the time may be here that I need to think about " drug therapy " again with the progression of my tracheal-airway symptoms! How about you? What are your symptoms and meds? Who did you see at the MAYO CLINIC? Where do you go now? Where do you live. I'm in Pennsylvania. Ciao, SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 NO Plaquinel that I can remember. Are you on It? Is it helping? What are your symptoms? SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 1/7/00 10:18:06 AM Central Standard Time, ssheridan@... writes: << What chemicals are you on? >> ROFL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 1/7/00 11:22:00 AM Central Standard Time, ssheridan@... writes: << ROFL ?? >> Rolling On Floor Laughing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Lu, whatta wonderful person you are! As bad as you feel, here you are consoling me. I love you, girl, and I pray you will soon be free of the pain. Love and God Bless, Jo Re: Missy >In a message dated 01/06/2000 7:54:22 PM Central Standard Time, >susuw@... writes: > ><< This is the exact reason I wasn't going to post about Missy, Jo. I don't > want you to be scared. I want you to remember what I said and take action > against it ever happening to you or the one you love. > Don't let RP scare you. Fight it! Fight like hell to win this war against it > and yes, it is a battle and one I absolutely refuse to lose or let any of > you lose. >> >It still scares the sh-t out of me....More so tonight, because i don't feel >good. I think I will just go to bed now...Take care everyone...I love you all >Lu > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Thanks, girls. Geez how I love y'uns Jo Re: Missy >This is the exact reason I wasn't going to post about Missy, Jo. I don't >want you to be scared. I want you to remember what I said and take action >against it ever happening to you or the one you love. >Don't let RP scare you. Fight it! Fight like hell to win this war against it >and yes, it is a battle and one I absolutely refuse to lose or let any of >you lose. >Sorry if I sound so grumpy, I just don't want what I said to scare you, but >I do want to make sure you all realize what we're up against. BUT, remember >too, that there are strength in numbers and we are going to win this one!!!! >Love you Jo, > >>>>>>>>>>>>>>>>>>>>>>>> >Thanks, . This scares the heck outta me. I'm so sorry about Missy. >She isn't suffering now, tho. >Jo > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 I am not a fan of the Mayo. Spent a week there. Was dismissed, actually pushed out of a neurologist's office. Told by the assigned nephrologist that, " if the tests dont show anything, there is nothing they will do " . Big waste of time. Lost 40% of my hearing in the interim. Pretty place though. What chemicals are you on? Re: Missy It's all kind of scary. My main symptoms have always been tracheal-airway. I had/have chronic epiglottitis and tracheitis and when I have a flare that's where my symptoms are most prominent. This past summer I started having an increased feeling of shortness of breath. Within a month I was experiencing chest pain with the shortness of breath especially with exercise. Well, I told my PCP. He ordered a Cardiopulmonary Stress Test... I think just to humor me... Well... it took 6 weeks before he called me with the results... Not good... It was abnormal and showed restrictive airway disease which was new... significant change since my last Pulmonary Function Test I had done a year prior.... well, it is 4 months later and I'm still waiting for a treatment plan. ... I see Dr Luthra at the MAYO CLINIC and it's taken this long to get an appt.... I find this all very frustrating. So my RP continues to progress when treatment should have been agressive in my eyes.... and the symptoms have progressed, the shortness of breath... has increased... I often wonder what the DOCs would do if they were in our shoes. I'm only 36 years old and have 2 yound children... I want to live a full life and there is no reason why I shouldn't be able to... " They " really need to get their act together... My PCP is good... don't get me wrong. I just don't know why they can't coordinate my care more effectively... quicker when I am having an advance in the disease. It takes forever to get to see Dr. Luthra too. Does anyone have any suggestions? I hear stuff like about Missy... It's really scary... I have been telling the dr's for a while now... SUE --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 I saw a guy named Kurtz at the Mayo. Have you ever tried Plaquenil? Re: Missy Presently... Oxycontin 10mg Q12hrs Prednisone 15mg QD Centrum Vitamin 1 QD Calcium 1000mg QD And I just started taking Vioxx 25mg QD I've had some bad experiences with some of the other drugs.... I tried Methotrexate... I got the injection on Monday... by that evening I was vomiting and continued for 2 days... then I would feel better for the weekend and then I would start the process all over again....until I couldn't do it any more! Then we tried a lower dose of the methothrexate and added Dapsone... which cause " leukemic " changes in my blood... the oncologist stopped the Dapsone and Methotrexate immediately and the abnormal blood cells went away! Next I did the Cyclosporine run... it caused severe uncontrolable hypertension... to the point that 6 weeks after the med was d/c'd I was still severely hypertensive and ended up have a small stroke. I will never take that again! At that point I talk very candidly with my PCP and said... the meds are going to kill me before the RP does so I have opted to use " DRUG THERAPY " very minimally up to this point. I have worked very hard at maintaining a healthy diet and getting at least 1 hour of exercise a day... bicycling and dancing is what I mainly do.... I cycle when possible (weather here doesn't always allow... In fact it's snowing presently) and I take Ballroom dance lessons on Wednesday evening and I go dancing with my honey on Friday and Saturday evening for about 5 hours each night.) I also believe attitude plays an important part in our illness. Realistically though, the time may be here that I need to think about " drug therapy " again with the progression of my tracheal-airway symptoms! How about you? What are your symptoms and meds? Who did you see at the MAYO CLINIC? Where do you go now? Where do you live. I'm in Pennsylvania. Ciao, SUE --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 ROFL ?? Re: Missy In a message dated 1/7/00 10:18:06 AM Central Standard Time, ssheridan@... writes: << What chemicals are you on? >> ROFL --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Get it. It works for me; stopped headaches. Its an antimalarial. Not many side effects. Does not suppress the immune system. Also fits in with my suspicions that RP is caused by a bug. Re: Missy NO Plaquinel that I can remember. Are you on It? Is it helping? What are your symptoms? SUE --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Sue, have you been on pred all along? how long have you been diagnosed with RP? I have only known I have it for four months and am confused about how quickly you can get into trouble. Re: Missy >It's all kind of scary. My main symptoms have always been tracheal-airway. I >had/have chronic epiglottitis and tracheitis and when I have a flare that's >where my symptoms are most prominent. This past summer I started having an >increased feeling of shortness of breath. Within a month I was experiencing >chest pain with the shortness of breath especially with exercise. Well, I >told my PCP. He ordered a Cardiopulmonary Stress Test... I think just to >humor me... Well... it took 6 weeks before he called me with the results... >Not good... It was abnormal and showed restrictive airway disease which was >new... significant change since my last Pulmonary Function Test I had done a >year prior.... well, it is 4 months later and I'm still waiting for a >treatment plan. ... I see Dr Luthra at the MAYO CLINIC and it's taken this >long to get an appt.... I find this all very frustrating. So my RP continues >to progress when treatment should have been agressive in my eyes.... and the >symptoms have progressed, the shortness of breath... has increased... I often >wonder what the DOCs would do if they were in our shoes. I'm only 36 years >old and have 2 yound children... I want to live a full life and there is no >reason why I shouldn't be able to... " They " really need to get their act >together... My PCP is good... don't get me wrong. I just don't know why they >can't coordinate my care more effectively... quicker when I am having an >advance in the disease. It takes forever to get to see Dr. Luthra too. > Does anyone have any suggestions? I hear stuff like about Missy... It's >really scary... I have been telling the dr's for a while now... >SUE > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 I too get very disappointed in the time it takes to see a doctor. It is frustrating. My main pcp decided he couldn't do anything more for me other then the prednisone, He suggested I change to the U of Washington care plan, well, I did. That was in June, I saw a ENT in August, they couldn't see anything on the inside of my ears, so they sent me to the Rheumy, he says cant see anything but lets start cutting back on the pred, I was on 20 and explaining to him I hurt inside my ears, I agreed to try to start to cut back on the pred as I have been on it 2 maybe 3 years. So I hurt more at l7 1/2 called rheumy and he said go see ENT. Sept I saw ENT and they said they couldn't see anything, go back to Rheumy, well that appointment took till Dec 30th. I am now on l2 1/2 rotating with 15 and hurting all the time, not intense pain but it hurts. So now I have a appointment with the ENT the 20th of January to see if they can see where my hurting has started. What does something bad have to happen before they even believe me? This managed health care some times really stinks, don't get me wrong I am glad I have health insurance, but it is for the low income people and sometimes I just wonder. Doc isn't worried about the pain pills, I just don't know. Take Care Debbie Re: Missy > > > >It's all kind of scary. My main symptoms have always been tracheal-airway. > I > >had/have chronic epiglottitis and tracheitis and when I have a flare that's > >where my symptoms are most prominent. This past summer I started having an > >increased feeling of shortness of breath. Within a month I was experiencing > >chest pain with the shortness of breath especially with exercise. Well, I > >told my PCP. He ordered a Cardiopulmonary Stress Test... I think just to > >humor me... Well... it took 6 weeks before he called me with the results... > >Not good... It was abnormal and showed restrictive airway disease which was > >new... significant change since my last Pulmonary Function Test I had done > a > >year prior.... well, it is 4 months later and I'm still waiting for a > >treatment plan. ... I see Dr Luthra at the MAYO CLINIC and it's taken this > >long to get an appt.... I find this all very frustrating. So my RP > continues > >to progress when treatment should have been agressive in my eyes.... and > the > >symptoms have progressed, the shortness of breath... has increased... I > often > >wonder what the DOCs would do if they were in our shoes. I'm only 36 years > >old and have 2 yound children... I want to live a full life and there is no > >reason why I shouldn't be able to... " They " really need to get their act > >together... My PCP is good... don't get me wrong. I just don't know why > they > >can't coordinate my care more effectively... quicker when I am having an > >advance in the disease. It takes forever to get to see Dr. Luthra too. > > Does anyone have any suggestions? I hear stuff like about Missy... It's > >really scary... I have been telling the dr's for a while now... > >SUE > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 , I will introduce myself to all of you all thoug this is directed to specifically. I started with a acute onset of hearing loss in my right ear in Jan 1987. The ENT MD that I went to was puzzled by what he found... there wasn't any fluid in the eustachian tube but the inner ear was grossly inflamed. I was treated at that time with Prednisone and Antibiotics. I continued to have vague ear and nasal symptoms for the rest of the year. In Dec 1987 I had an acute " sore throat " and within a few hour had difficulty swallowing. I was diagnosed with severe epiglottits and tracheitis. I was hospitalized in ICU for a while and the epiglotitis/tracheitis turned into " CHRONIC " epiglotitis/tracheitis. I continued to have symptoms for a while but the Docs weren't sure what was going on. I was tested gor multiple things, Lupus, Sarcoidosis, Wegener's... I started having arthritic symptoms on top of the ear-nose-throat problems. I was having inflamation in my ankles and hands and wrists... interferring with my work. At that point I started doing some research on my own... You know how people are quick to classify you as a HYPOCHONDRIAC.... and they even get you to think that just maybe... The ENT doctor kept saying that he felt that my problems were something AUTOIM MUNE. Being an RN I started researching things... Arthritis is Autoimmune and .... well anyways I told the ENT physician about my problems with my joints... He conferred with the Rheumatologist and my Primary Care Physician (PCP) and told them of his suspicions that I had a rare disease that he had only seen once during an internship called Relapsing Polychondritis. That was in 1993. At that time they did biopsies of my trachea, arytenoid cartilage, nasal cartilage which confirmed the diagnosis. To further confirm the diagnosis I was referred to the MAYO CLINIC to Dr. Luthra... A world reknown specialist in RP. He also agreed and confirmed my dx. I have continued to have a " rocky " course... as is common with RP. Symptoms vary on any given day. I have the head pain that others have spoke about on the left side- involving the eye, nose, cheek, temporal area...It truly makes me very ill for days...the side of my face becomes beet red and swollen and my vision blurred. I have had multiple joint involvement where I have received coritsone injections for severe inflamation. Then there's the airway involvement... trachea-epiglotis and now even other lung tissues. I have tried multiple drugs for tx and have had problems with the side affects so I was unable. I even experienced severe steriod myopathy one time when I was on a significantly high dose of Prednisone. I have been on the Prednisone basically since 1987.... there have been some breif periods of time in which I did not have to take any but the time has been very brief. Presently I am on a very low dose of 15mg QD. I have been on a dose as high as 80mg QD. Onset of exacerbations.... varies greatly... sometimes you will know it's coming and other times it will just hit. I hope I'm not scaring you... I just want you to know. I find that I can deal with things better when I know exactly what I am dealing with!!!! It's not so frightening. Know that we are all here for you. You can call me anytime... I will give you my number. i believe that there is a " cure " for this disease. We just all have to have faith and endurance.... Just think of what incredible people we are becoming..... LOL There are going to be days that you think you can't go on but you will. There will be days that the pain will be sooooooooooo BAD that you will wish that it was over.... I know we've all been there!!!!!!!!!! The key is to find a MD that will treat you and listen to you. These MD's that won't give pain meds are nuts... I wish that they experienced half the pain for just a day.... they'd be screaming for pain medication.... I'm very fortunate... My PCP... is great and doesn't believe in torture... in other words... he gives my adequate pain medication and I'm generally comfortabler as far as the pain goes... I still have the " breathing-short of breath feeling " that we haven't found any medication to alleviate that sensation... OH well. I have to run right now to take my boys to the Bowling Alley... I'll continue this when I return.... Ciao, SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 As far as the ear pain, I very often was complaining of inner ear pain and the ENT physician could not see anything either but explained to me that it is a REFERRED pain from the throat area... Actually the very first symptom of an impending exacerbation is this vague but very bothersome inner ear pain. The ENT MD finally concluded that it was referred pain from my tracheal/throat inflamation. He explained that there is a nerve that inervates in the area that can cause referred pain. So he never made me feel like I was " nuts " . So of course after the swelling/inflamation in the throat and trachea subsided so did the ear pain.... So ask the ENT MD.... sometimes they just forget about the simple things.... Do you have inflamation somewhere that could be causing a referred pain in your ears??????????? SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 I will send all of your condolences to Missy's brother. Thank you. >>>>>>>>>>>>>>>>>>> pass on my sympathy to missey's brother please. She is at peace now Please send my condolances on to Missy's family. My thoughts and prayers are with them. SUE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Thanks, . Jo Re: Missy > > >I will send all of your condolences to Missy's brother. Thank you. > >>>>>>>>>>>>>>>>>>>> > pass on my sympathy to missey's brother please. She is at peace now > >Please send my condolances on to Missy's family. My thoughts and prayers are >with them. SUE > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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