Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 In a message dated 12/05/2000 10:24:23 PM Central Standard Time, pangc002@... writes: << Thanks Glenda! I'm still elated at finding this group myself. I don't feel abused at all -- after all what else do I have to use my training for these days! I still worry sometimes I'm doing too much doctor hat but figure someone will tell me if I am... Love Carolyn >> Hi Carolyn, I haven't gotten to e-mail you much because when you joined the group I was took sick to be online much! Sooo I am way behind on all the newer folks that joined the group. But I want to ask you { Okay I am being the nosey one this time } lol Do you still practice? How do you feel? What meds are you on? Have I asked enough yet? lol sorry.. Please take care, love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 In a message dated 12/06/2000 9:15:15 PM Central Standard Time, Thank you Carolyn for updating me and yes I would like to read the other one. Isn't it amazing that the doctors can't figure this stuff out, I think we all know more than they do and what test can show what. They drive me crazy. I am starting to flare tonight. I'm going to my rheumy in the morning. So we shall see what the heck he tries this time. I hope you get your flare under control and feel much better for the Holidays. Take care, Love Lu << On that basis concluded I had no rheum disease. Which we all know is incorrect -- you can have neg labs and still have RP -- in fact, one of the criteria is seronegative (negative labs) arthritis. So when I got back to Hawaii I looked RP up and guess what! everything fit!!! That's when I found the group. I was pretty dispirited and low in confidence then (the docs here thought I was crazy and that I was doing something to my ears to deform them -- yes , even Dr. Napier who did your biopsy) and kept wanting me to see the psychiatrists. Thanks to the marvelous support from this group, I started to get my confidence back and emailed Dr. Trentham anad Dr. Buckner. Dr. trentham (his usual decisive self) said it couldn't be anything else but RP. The docs here are still having trouble and I can tell they're really uneasy about the RP so I'm planning to go up in January (hopefully I'll be better enough to travel by then) and see (probably), Drs Buckner, Dr. Trentham, and someone at Mayo again. That way the docs here will have several people who know my case they can call if they have questions. Since I've been back from Mayo (about 6-7 weeks now), I've been having a big time flare. I think it was triggered by thyroid surgery I had to have at Mayo to remove a large left thyroid growth (benign),. As you know, intubation (as in surgery) can trigger or exacerbate RP in the airways. So I've been on high dose pred for 6 weeks and 2 weeks ago started MTX, colchisine and Minocin. That's the long and short and long of it. Will see if I cna dig up my original email. Glad you're better! Carolyn >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 In a message dated 12/6/00 10:15:14 PM Eastern Standard Time, pangc002@... writes: << The docs here are still having trouble and I can tell they're really uneasy about the RP so I'm planning to go up in January (hopefully I'll be better enough to travel by then) and see (probably), Drs Buckner, Dr. Trentham, and someone at Mayo again. That way the docs here will have several people who know my case they can call if they have questions. >> Hi Carolyn: I just wanted to let you know that I went last March to see Dr. Trentham and was not disappointed. I have three brothers who are Family Practice Doctors and they have a lot of confidence in him. I just got back on line with the group so I am picking up bits a pieces. I hope that you find the group as supportive as I have. Donna CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 Hi Lu! Yes, I remember when I first signed on everyone kept asking how you were. I've been on disability for 3-4 years now. Briefly, I signed on after returning from the Mayo clinic to see if they could figure out what I had had these last three years. If i can resurrect it I'll send my original email that goes into mroe detail. All three ENTs at Mayo talked about how they thought I might have RP, but I think the rheum I saw there was unfamiliar with it (unfortunately -- they have at least 2 who have a lot of experience with RP ), so he was most impressed that my " rheum labs " were neg except for a positive pANCA. On that basis concluded I had no rheum disease. Which we all know is incorrect -- you can have neg labs and still have RP -- in fact, one of the criteria is seronegative (negative labs) arthritis. So when I got back to Hawaii I looked RP up and guess what! everything fit!!! That's when I found the group. I was pretty dispirited and low in confidence then (the docs here thought I was crazy and that I was doing something to my ears to deform them -- yes , even Dr. Napier who did your biopsy) and kept wanting me to see the psychiatrists. Thanks to the marvelous support from this group, I started to get my confidence back and emailed Dr. Trentham anad Dr. Buckner. Dr. trentham (his usual decisive self) said it couldn't be anything else but RP. The docs here are still having trouble and I can tell they're really uneasy about the RP so I'm planning to go up in January (hopefully I'll be better enough to travel by then) and see (probably), Drs Buckner, Dr. Trentham, and someone at Mayo again. That way the docs here will have several people who know my case they can call if they have questions. Since I've been back from Mayo (about 6-7 weeks now), I've been having a big time flare. I think it was triggered by thyroid surgery I had to have at Mayo to remove a large left thyroid growth (benign),. As you know, intubation (as in surgery) can trigger or exacerbate RP in the airways. So I've been on high dose pred for 6 weeks and 2 weeks ago started MTX, colchisine and Minocin. That's the long and short and long of it. Will see if I cna dig up my original email. Glad you're better! Carolyn Re: Carolyn > In a message dated 12/05/2000 10:24:23 PM Central Standard Time, > pangc002@... writes: > > << Thanks Glenda! I'm still elated at finding this group myself. I don't > feel > abused at all -- after all what else do I have to use my training for these > days! I still worry sometimes I'm doing too much doctor hat but figure > someone will tell me if I am... > Love > Carolyn >> > Hi Carolyn, > I haven't gotten to e-mail you much because when you joined the group I was > took sick to be online much! Sooo I am way behind on all the newer folks that > joined the group. > But I want to ask you { Okay I am being the nosey one this time } lol Do you > still practice? > How do you feel? What meds are you on? Have I asked enough yet? lol sorry.. > Please take care, love > Lu > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Briefly, I signed on after returning from the Mayo clinic to see if they could figure out what I had had these last three years. If i can resurrect it I'll send my original email that goes into mroe detail. All three ENTs at Mayo talked about how they thought I might have RP, but I think the rheum I saw there was unfamiliar with it (unfortunately -- they have at least 2 who have a lot of experience with RP ), so he was most impressed that my "rheum labs" were neg except for a positive pANCA. On that basis concluded I had no rheum disease. Which we all know is incorrect -- you can have neg labs and still have RP -- in fact, one of the criteria is seronegative (negative labs) arthritis. Gee, Carolyn, Sounds like a nightmare! I hope you can get a dx soon. I know it will take a lot off your mind. Some of the stories I hear are really crazy. Listening to stories like this, makes me even happier that we are officially a foundation. Carolyn, my dx's was quick and easy determine. I thank God for that. Hang in there and I'm sure you will get the answers that you so much need to put your mind at ease. love rene' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Thanks Rene! I really needed that. I'm in the middle of long distance nightmare trying to put together a schedule in Jan with Drs. Trentham,Buckner and Mayo........my poor ol' brain! Carolyn Re: Carolyn Briefly, I signed on after returning from the Mayo clinic to see if they could figure out what I had had these last three years. If i can resurrect it I'll send my original email that goes into mroe detail. All three ENTs at Mayo talked about how they thought I might have RP, but I think the rheum I saw there was unfamiliar with it (unfortunately -- they have at least 2 who have a lot of experience with RP ), so he was most impressed that my "rheum labs" were neg except for a positive pANCA. On that basis concluded I had no rheum disease. Which we all know is incorrect -- you can have neg labs and still have RP -- in fact, one of the criteria is seronegative (negative labs) arthritis. Gee, Carolyn, Sounds like a nightmare! I hope you can get a dx soon. I know it will take a lot off your mind. Some of the stories I hear are really crazy. Listening to stories like this, makes me even happier that we are officially a foundation. Carolyn, my dx's was quick and easy determine. I thank God for that. Hang in there and I'm sure you will get the answers that you so much need to put your mind at ease. love rene' DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Thanks Rene! I really needed that. I'm in the middle of long distance nightmare trying to put together a schedule in Jan with Drs. Trentham,Buckner and Mayo........my poor ol' brain! Carolyn Re: Carolyn Briefly, I signed on after returning from the Mayo clinic to see if they could figure out what I had had these last three years. If i can resurrect it I'll send my original email that goes into mroe detail. All three ENTs at Mayo talked about how they thought I might have RP, but I think the rheum I saw there was unfamiliar with it (unfortunately -- they have at least 2 who have a lot of experience with RP ), so he was most impressed that my "rheum labs" were neg except for a positive pANCA. On that basis concluded I had no rheum disease. Which we all know is incorrect -- you can have neg labs and still have RP -- in fact, one of the criteria is seronegative (negative labs) arthritis. Gee, Carolyn, Sounds like a nightmare! I hope you can get a dx soon. I know it will take a lot off your mind. Some of the stories I hear are really crazy. Listening to stories like this, makes me even happier that we are officially a foundation. Carolyn, my dx's was quick and easy determine. I thank God for that. Hang in there and I'm sure you will get the answers that you so much need to put your mind at ease. love rene' DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Carolyn, I'm so glad you're going for treatment with the best. I think you'll be glad you did, at least you;ll know what you're facing and maybe it won't be as bad as you think! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Carolyn, I know it is hard to put such a package together! One thing that might work is a travel agent to help with some of the logistics. Do you have one or know of one? As I am writing this, I just thought of someone I 'met' at the rheumatic@egroups who has his own on-line travel business....does a lot of cruises but lots of other stuff, too. As a fellow rheumatic person, he might be a good source of information as far as airlines, hotels, land transportation...etc. for someone who could use a little TCL. His name is Geoff Crenshaw and his website is: http://www.800-800- cruise.com and his personal e-mail address is: geoff@800-800- cruise.com Although I have never met him in person, I have known him through the rheumatic group for over two years. I feel like he is a very trustworthy individual. Just a thought :-) Good luck and know that we're pulling for you. love and hugs, Connie > Thanks Rene! > > I really needed that. I'm in the middle of long distance nightmare trying to put together a schedule in Jan with Drs. Trentham,Buckner and Mayo........my poor ol' brain! > Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 Carolyn, I know it is hard to put such a package together! One thing that might work is a travel agent to help with some of the logistics. Do you have one or know of one? As I am writing this, I just thought of someone I 'met' at the rheumatic@egroups who has his own on-line travel business....does a lot of cruises but lots of other stuff, too. As a fellow rheumatic person, he might be a good source of information as far as airlines, hotels, land transportation...etc. for someone who could use a little TCL. His name is Geoff Crenshaw and his website is: http://www.800-800- cruise.com and his personal e-mail address is: geoff@800-800- cruise.com Although I have never met him in person, I have known him through the rheumatic group for over two years. I feel like he is a very trustworthy individual. Just a thought :-) Good luck and know that we're pulling for you. love and hugs, Connie > Thanks Rene! > > I really needed that. I'm in the middle of long distance nightmare trying to put together a schedule in Jan with Drs. Trentham,Buckner and Mayo........my poor ol' brain! > Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Hi Carolyn yes, I've thought of that, but as far as my MD's are concerned regarding my CT scan result and other symptoms it's acid reflux... so I'll just take one day at a time, take my Losec, Minocin and Lactobacillus etcc... and see how it goes. I will be tapering off the pred anyway, and check if symptoms get any worse... I'll keep you posted... Thanks for your concern, Carolyn, I appreciate it... I'm hoping it's not RP, I'm trying to be optimistic, but also realistic...so all I can do right now is listen to my body and act accordingly. luv ya Carmela > >Reply-To: Rpolychondritis (AT) e >To: Rpolychondritis (AT) e> >Subject: Re: M7b3r5/ct scan >Date: Thu, 21 Dec 2000 10:09:01 -1000 > >Carmela, do you think the edema in the false vocal cords just might be RP?] >Carolyn > M7b3r5 > > >Date: Wed, 20 Dec 2000 20:02:38 -0500 > > > > > >M7B3R5 > > >M7B3R5 > > > > > > > > >THROAT SORENESS AND VOICE CHANGE > > > > > > > > >SORETHROAT > > > > > >Sore throat is a common symptom or upper respiratory viral infections. >Most > > >will resolve between 24-48 hours (Little et al, 1997). Occasionally, >sore > > >throat can be due to acute epiglottitis. The topic of sore throat is > > >covered in Module 1B. Only acute epiglottitis and chronic tonsillitis >will > > >be considered here. > > > > >_________________________________________________________________________ > > Get Your Private, Free E-mail from MSN Hotmail at >http://www.hotmail.com. > > > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS >RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR >BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR >PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND >TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 Well, glad to know you're still amongst us anyway. We were all getting a wee bit worried about you girl. Rest up Carolyn. After the marathon you just did I'm sure you need it. Post when you can, but take your time. The main thing now is to REST!! Welcome home, W >>>>>>>>>>>>>>>>>>>>>>> Ok you guys -- I got over 900 messages here at home. Crawled intohonolulu last night -- stayed over in Seattle two extra days 'cause was just too sick and too tired to travel. Still not doing too good but thought I'd better post and let you know I'm home. Couldn't get the darn laptop to send to you guys in Seattle no matter hwat I did. Will post later and update. Carolyn --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.219 / Virus Database: 103 - Release Date: 12/5/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 January 24, 2001 3:43 p.m. Hello, everyone, I know that many of you are concerned about Carolyn. I just spoke with her on the telephone about an hour ago. She is at home and resting. Carolyn said that she will post to the group as soon as she's feeling better. Please continue to keep her in your prayers.....Aloha, karen ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , Thank you so very much for letting us know how Carolyn is. I've been quite worried. Please let her know the next time you talk to her that we all wish her well and she is in our thoughts and prayers. Thanks again, Elaine Re: Carolyn January 24, 2001 3:43 p.m. Hello, everyone, I know that many of you are concerned about Carolyn. I just spoke with her on the telephone about an hour ago. She is at home and resting. Carolyn said that she will post to the group as soon as she's feeling better. Please continue to keep her in your prayers.....Aloha, karen ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , thank you for the update on Carolyn. I have been so concerned. If you talk to her let her know we all miss her and love her lots. How are you doing? Please let us know about you too!!! Hugs -- In Rpolychondritis (AT) e, " Elaine Thurber " wrote: > , > Thank you so very much for letting us know how Carolyn is. I've been quite > worried. Please let her know the next time you talk to her that we all wish > her well and she is in our thoughts and prayers. > Thanks again, > Elaine > > Re: Carolyn > > > January 24, 2001 > 3:43 p.m. > > Hello, everyone, > > I know that many of you are concerned about Carolyn. I just spoke with > her on the telephone about an hour ago. She is at home and resting. > Carolyn said that she will post to the group as soon as she's feeling > better. > > Please continue to keep her in your prayers.....Aloha, karen > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/tagj. > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED > HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND > ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Carolyn, I have pain around my belly button and my lower left side distends out like a basketball when I haven't had a BM. That is very uncomfortable, but I haven't had the pain spread to my back. Thats not uncommon though. I know of others with severe constipation who have lower back pain. I'm not feeling well, but have recovered from the aseptic meningitis. I go for carnitine level labs on Mon. and Tues of next week. Thanks for asking. Quote Link to comment Share on other sites More sharing options...
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