Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 Thank you all so very much for sharing with me. Every one of you who does makes a little part of me feel that much less " crazy " and that much more real. Sick, maybe, but real... I even got up enough courage to email Dr. Trentham (got his address from the Web site) and ask him if he thought I had RP. Cross your fingers for me everyone! Glenda, just try and keep me from posting! I feel like I've just started in on a carte blanche meal after starving for a long long time... Please keep sharing with me everyone, it really really helps. I guess it's not so unusual to have the sweats and maybe even the chills then. And even to have the docs think you're crazy. What about the episodes of weakness, Does anyone else have them? And what kind of symptoms do you have between episodes. I guess I'm mostly asking if anyone else feels pain between episodes, like apulling. Not sure if this is just me, because of the large amount of surgical scarring I already have in my ears and throat and maybe the deformity from the RP (again, if that's what I have, which I'm starting to believe I do more and more) is pulling on it? Sometimes it even feels like it is unraveling or something. And, yes, Lillian, I've had ENTs who thought I was causing the deformity in my ears although no one suggested anything really kinky out loud, maybe they were thinking that! Sheila, how come the rheumy's wouldn't treat you. THat sounds just awful! Luckily it sounds like you have a great primary care doctor. Maybe you even get more out of someone who really cares and will work with you even if they're not the world's expert in RP, yeah? , Thanks so much for the explanation. Evry little bit (and that was a big bit) I learn helps that much more -- expecially from the " patient's side " . I'm glad your thyroid is the " good " kind. You probably already know this since you seem so knowledgeable about medical matters but the thyroid actually wraps around the trachea and esophagus in the neck. It's not just in the front like we always think, so I can imagine the combination is terrible. It's like when I had the weakness and my balance got worse -- couldn't tell what was causing the problems walking and stuff after awhile. And I love your typing too, Heidi. Just everyone keep typing to me OK? Thanks so much again everyone. Love you all Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 What meds are you on Carolyn? This could have a lot to do with the weakness. Plus, I know a lot of us have this feeling from time to time, if not always. I'll send you a letter also that I received from Dr. Buckner in Washington state. She is doing a survey on RP and a lot of us here have donated a couple of vials of blood to her research. It cost you nothing but the blood of course, LOL and for me anyway, the satisfaction of knowing you'll helping in a small way help find a cure for this disease. >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> What about the episodes of weakness, Does anyone else have them? And what kind of symptoms do you have between episodes. I guess I'm mostly asking if anyone else feels pain between episodes, like apulling. Not sure if this is just me, because of the large amount of surgical scarring I already have in my ears and throat and maybe the deformity from the RP (again, if that's what I have, which I'm starting to believe I do more and more) is pulling on it? Sometimes it even feels like it is unraveling or something. And, yes, Lillian, I've had ENTs who thought I was causing the deformity in my ears although no one suggested anything really kinky out loud, maybe they were thinking that! --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.209 / Virus Database: 99 - Release Date: 11/2/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 Hi again ! I'm only on Prednisone for the last 2-3 weeks (remember, I haven't been diagnosed so I'm self treating) with Keflex and Rifampin (two antibiotics). Also on Paxil for migraine headaches and prilosec for esophageal reflux. Don't think it's the meds. Even though I know prednisone can cause weakness, I wasn't taking it but one or two doses every few months when the rash I had/have got severe. By the way, what's LOL. I figured out it's not " little old lady " -- my best guess is " lots of love " or " lots of luck " or both? Thanks again, Carolyn Re: More questions? > What meds are you on Carolyn? This could have a lot to do with the > weakness. Plus, I know a lot of us have this feeling from time to time, if > not always. > I'll send you a letter also that I received from Dr. Buckner in Washington > state. She is doing a survey on RP and a lot of us here have donated a > couple of vials of blood to her research. It cost you nothing but the blood > of course, LOL and for me anyway, the satisfaction of knowing you'll helping > in a small way help find a cure for this disease. > > >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> > What about the episodes of weakness, Does anyone else have them? And > what kind of symptoms do you have between episodes. I guess I'm > mostly asking if anyone else feels pain between episodes, like > apulling. Not sure if this is just me, because of the large amount > of surgical scarring I already have in my ears and throat and maybe > the deformity from the RP (again, if that's what I have, which I'm > starting to believe I do more and more) is pulling on it? Sometimes > it even feels like it is unraveling or something. And, yes, Lillian, > I've had ENTs who thought I was causing the deformity in my ears > although no one suggested anything really kinky out loud, maybe they > were thinking that! > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.209 / Virus Database: 99 - Release Date: 11/2/00 > > > > > 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 November 11, 2000 Report Share Posted November 11, 2000 Sorry Carolyn, I thought you'd mentioned your meds, but couldn't remember. I know a lot of people here are taking antibiotics for their RP and I believe (but don't quote me on this) that they are in the mycin family of antibiotics. Hopefully someone will enlighten us both again on this. LOL means: " laughing out loud " . I need to send you the " list " of initials so you'll know what we're saying when we use them. This is just crazy computer talk, that's all. W >>>>>>>>>>>>>>>>>>>>>>>>>>>> Hi again ! I'm only on Prednisone for the last 2-3 weeks (remember, I haven't been diagnosed so I'm self treating) with Keflex and Rifampin (two antibiotics). Also on Paxil for migraine headaches and prilosec for esophageal reflux. Don't think it's the meds. Even though I know prednisone can cause weakness, I wasn't taking it but one or two doses every few months when the rash I had/have got severe. By the way, what's LOL. I figured out it's not " little old lady " -- my best guess is " lots of love " or " lots of luck " or both? Thanks again, Carolyn --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.209 / Virus Database: 99 - Release Date: 11/2/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 Carolyn, I love it! Now you sound like me when I first found the group. I am glad you found us and yes now you are not alone. You will never be alone again when it comes to this group they are the greatest. I have the periods of tired or weakness. It is like my body is recovery from a bad illness or infection. I take Imuran which is an immuno suppressant.(sp) It takes my immune system down so I tired from that too. If I don't listen when it says I am tired I will get sick. Hope this helps! Lots of Love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 Carolyn, I take Bactrum (sp.) and Minocin on opposite days. The Bactrum is supposed to help prevent infection and the Minocin is for the RP. and my Fibro. Hugs, Sandy ----- Original Message ----- > Sorry Carolyn, > I thought you'd mentioned your meds, but couldn't remember. > I know a lot of people here are taking antibiotics for their RP and I > believe (but don't quote me on this) that they are in the mycin family of > antibiotics. > Hopefully someone will enlighten us both again on this. > LOL means: " laughing out loud " . I need to send you the " list " of initials so > you'll know what we're saying when we use them. This is just crazy computer > talk, that's all. > W > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > Hi again ! > I'm only on Prednisone for the last 2-3 weeks (remember, I haven't been > diagnosed so I'm self treating) with Keflex and Rifampin (two antibiotics). > Also on Paxil for migraine headaches and prilosec for esophageal reflux. > Don't think it's the meds. Even though I know prednisone can cause > weakness, I wasn't taking it but one or two doses every few months when the > rash I had/have got severe. > > By the way, what's LOL. I figured out it's not " little old lady " -- my best > guess is " lots of love " or " lots of luck " or both? > > Thanks again, > Carolyn > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.209 / Virus Database: 99 - Release Date: 11/2/00 > > > > > 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...
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