Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Hi Sunshine and welcome to this group. Glad to hear that you have been reading and educating yourself about RP. That is something we all have to do, and this is a great place to do it. No wonder your doctors don't agree! Plenty of doc's...my PCP being one....know nothing about RP. I am the first RP patient he has ever had. I'm glad you are going to Mayo. It seems that the people who go there get really good care and get tested completely. I am like you in that I also have other autoimmune disease. Fun??? Not!! I have just finished a long flare in the area you are talking about....the cartilage around the sternum. I would suggest calling your doctor about the breathing problem you had last night. That is not something you want to mess with. Sounds like you are due for more prednisone until you get your symptoms under control. Many in the group have been on low doses for years. I have been on it for 2 1/2 years, but that isn't long around this group. Many of us also take immune-suppressent drugs along with the prednisone. Some only take prednisone when flaring. BTW, I am squeek, and no offense taken at your squeaky voice. I am squeek because of taking Remicade, which is made with a mouse protein...squeek, squeek! I alos get the hoarseness, and cannot talk loud or long. Some people consider that a blessing!!! Please at least check in with your doctor today about your breathing problem. , our resident worrier is gone today, so I will have to worry about you all day long!!! Let us know what you find out. Take care! squeek --- sunshinemirage wrote: > Hi, my nic-name is Sunshine. I have not been > " positively " diagnosed > with RP and I am awaiting an appointment at the Mayo > Clinic. The > only information I have about RP I have learned on > the Internet and > from listening to your Group over the last week... > I have several different opinions from several > different > doctors...none of them agree except my ENT and my > family > doctor...they say RP, but without much explanation, > just a name...it > has been about 1 1/2 years since my ENT first > diagnosed RP along with > GERD. BUT, I have learned from your group that one > of the diagnoses, > inflamed carotid artery, could be related (diagnosed > some 10 years > ago)! The Rheumatologist I went to says > " eh " ...don't y'all just > love doctors? > I should also explain that I have another > auto-immune disease named > linear/morphia scleroderma.. I am EXTRAORDINARILY > lucky with the > scleroderma because (at this point, anyway) it is > not systemic, only > affects the left side of my forehead and that my > forehead is only > slightly disfigured and easily hidden with bangs. > The presence of > one autoimmune disease leads doctors to easily > believe I could have > another;) > My symptoms start with the right side of my voice > box (or carotid > artery?). I can feel a line of pain that travels > from there into my > middle ear. Most recently I was experiencing chest > pain and the doc > thought it was the cartilage inflamed around my > sternum. My voice > gets hoarse (as it does with GERD) and " tired " ...I > can't talk loudly > without squeaking (no offense Squeaky) or more pain. > Last week I had > a very tough nite because my throat was so swollen I > felt I couldn't > breathe when lying down, so wound up sleeping > upright (if you could > call it sleeping). I am presently on a double dose > of > Celebrex...200mg twice daily. About a Month ago the > doc had me on a > dose pak of Methyl somthingsomthing kind of > prednisone...it helped > for about a week. He doesn't want to give it to me > again, if he can > help it...not that I want it, either, except to kick > this " whatever " > out of here! This episode has been going on for the > better part of > this year. > I am afraid the docs at Mayo will find " nothing > wrong " ...I am afraid > they will say RP. > Oh, De-Nial runs deep in my family! > > Sunshine > > > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 In a message dated 7/7/02 9:11:40 AM Pacific Daylight Time, lizwizz2000@... writes: << Some of us were lucky to get together last labor day weekend in Oklahoma, with a lot of help from Miss Wonderful, aka Heidi. We are planning another one in 2004 and I am really looking forward to that and meeting old friends and making new ones, in the flesh!! >> Oh Liz, thanks for reminding me of that WONDERFUL weekend. Geez, I can't wait til the next. You guys will hear me ticking, so I can't sneak up on you. LOL For all of you who couldn't go last year and for all you newbies... PLEASE start savingy your pennies NOW, You have 2 years. It is worth every cent to meet every one. But let me warn you, it is SOOO very hard to leave them too. It will be in Oregon this next time. Please try to plan for it. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi Sunshine, gee, seems like you have been gone a long time. LOL I'm glad to hear that you are feeling better. Boy with all that exercise, put a quarter in the exercise jar and watch your change really add up. Marilyn will let us know when the 3 months are up and then you can add it to the great RP Foundation. Keep posting , we love to hear from you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Sunshine, So glad you liked the brochures. I can't thank Glenda and Heidi enough. If you need more, just let me know. Happy Anniversary a little early. I have been married 28 years too. Hope you two enjoy another wonderful 28 years and more. It's good hearing from you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Love, Sunshine > P.S. is my husband...e-mail is set up in his > name. He is THE > greatest...my BEST friend! We celebrate our 28th > year together on > Wednesday. > > Congratulations on your 28th anniversary! That is quite a feat for these times. Hope it is your best one yet. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Happy anniversary! It's nice to hear about such a wonderful relationship! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Thanks ! Do you think some photos of our 2 pretty little fillies would serve to cheer some in the group? Love, Sunshine > Happy anniversary! > It's nice to hear about such a wonderful relationship! > M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Congratulations on the 28th ann. My husband and I have been married for 28 years in August. Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 I think that sounds Great!!!!!!! I would do that and see what happens. Carol A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 SUNSHINE INSTEAD OF YOU FIGHTING THIS BATTLE, WHY DON'T YOU HAVE THE ENT THAT SAYS YOU HAVE RP, AND THE RHEUMY THAT SAYS YOU DON'T , GET TOGETHER FOR A CONFERENCE AND COME UP WITH AN EXPLANATION FOR YOU. LET THEM FIGHT IT OUT SINCE THEY ARE THE ONES THAT ARE DISAGREEING. DAWN sunshinemirage wrote: Boy, now i'm not so sure Mayo is going to be able to help!My ENT said i would be wasting my time and $...there is no test to conslusively diagnos RP and he maintains he is 100% sure i have it. But the Rhuemy here says i don't have RP based on a CTscan. I just want two opinions that agree...not so simple, i guess. Anyway, i haven't been able to get on the computer and keep up with y'all, but my appointment at MAyo is the 22nd of Aug with Dr. Michet...hope this one is not a jerk, as y'all know tooooo many of them are!My thoughts are with the group often. Prayers to all you all and extra ones for those of you in extra big need...hope surgeries go perfectly, jobs are found quickly, and all illness goes AWAY!Love, Sunshine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Hi Sunshine! Yes, I will be able to get unemployment. Overall, I think this is for the best, so that I can cut back to half time. My body needs that! Thanks for your support!! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 > Sqeek, hope you are feeling better, too! > Love, sunshine Hi Sunshine, How are you doing? I had my Remicade Friday, cut my pred to 5 mg., and don't know how I'm doing yet. Had a miserable headache all day yesterday and woke up in the middle of the night with another one. Not fun! This morning, I feel o.k., so hopefully it is just a side effect of Remicade. My son and grandsons left this morning for the first leg of their vacation, so it will be a calm and quiet week around here. I am looking forward to getting some rest! Take care! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Sunshine Heidi and will be so proud of you! Wait until they get back and see how great a job that Dawn and Squeek are doing to keep you all motivated. See everyone...join the foundation, it is for a good cause....US! The medic alert bracelets are an important part for us also. I know I wear mine all the time. You have to be careful when it comes to your meds. Take care Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 --- sunshinemirage wrote: > Here i am getting frustrated...has any of you every > been frustrated with > doctors?@#?!? Dr. Michet says my symptoms are > atypical of RP...no ear > flares, blood work normal, 6 months a long time for > a flare. ENT says > my larnyx looks normal and agrees with rheumy, maybe > i am having > muscle spasm/inflamation around throat area. Next > step a PH monitor > to wear thru my nose down to the spincter muscle at > the end of my > esophogus ( a mere 24 hours!). I am to eat and act > normally (yea, > right). This is to measure how well my meds are > working (if) for acid > reflux (GERD). You all know, of course, i don't > want RP, so this is good > news, but sure don't want o get out of here with > " nothing' " and no > treatment as a diagnosis. > Sunshine not feeling very sunny > > Ah, Sunshine! Yes, I think we all get frustrated with doctors....at least I sure do! I hope to God that you don't have RP, but you need to know what you do have. It's very frustrating to know something is wrong, but not know what it is. I will wish you luck! Take care and let us know how things are going. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 >> Squeak, hope you are feeling better and having less > pain...like NONE? > , sounds like you are in need of some rest? > Sharon, hope everything is o.k. with your hubbie! > Happy Birthday to all i missed and to Barbara C...a > Virgo like me! > Love y'all, > Sunshine > Hi and welcome back Sunshine, Your trip to Mayo sounds as if it was very productive. Now I hope you can get your local doctors to cooperate! I was on Plaquenil for a while, but it never helped me. Just one of those individual things that we deal with constantly. For you, it may be just the thing. Hopefully! Would I ever love having NO PAIN...wouldn't we all for that matter????? Not there yet and it seems as if the Remicade did nothing this time either. So, I am going to see what my doctor wants to do about that on Wed. I am almost at my maximum dose, so I suppose he will want to raise the dose once again and have me try for a bit longer. Don't know if I want a larger dose tho. Even the nurses comment on the whopping dose I take already. Anyway, glad you got some help at Mayo, and that you are home and back on line. Take care! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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