Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Kim, Darlin' what are we going to do with you. I will say an extra long prayer today for you. I do have to say I had shingles and I know how painful they are. It is a wonder you have not had them before. My infection disease doc, Dr. Francois Holder (I love that name) told me that when you have shingles, your immune system is really under attack. The first thing that ask you is are you HIV+. Nooooo but then they start looking for other things. My shingles started on the left side of my face. First I had horrible pain in my face and then the actual blebs started on the left side of my nose and followed the track of nerves right across my face. I also developed the facial palsy at the same time....everyone discounts my facial drooping as nerves. It even affected my upper and lower eye lids on the left and caused horrible ear pain. But the famvir, zovirax or whatever stopped it in its tracks....literally. Be sure to ask for something for nerve pain afterwards. You can have a post-herpetic neuralgia - I use amitriptylene - if you are on neurontin or any other anti-seizure and I know you are it should take care of that problem if it occurs. Well, sweetie, I am going to get my humongous eyebrows ripped out with wax and get my bangs cut in a few so I am going to go. Can you imagine me driving anyway and now I can't see past my bangs. If you are around my area stay out of the way until after my appointment. Love to you and all of the NS group. Terri G. > > Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. > > my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. > > I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to > be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is > also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money > for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? > > lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? > > what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... > > and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? > > love you all and sory i am so freaking self centered these days.... > good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do > i really trust them to do cytoxen? lets get real. > > take care and love you all > it has to end soon right? lets hope in a positive way, or at least neutral way, > you are all in my prayers and i cant thank you enough for yours > > kim > > > --------------------------------- > How low will we go? 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Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Kim- i am so sorry you are having such a hard time- i wish u the best of luck and a quick recovery from your health issues- we are all pulling foe you-- MATT --- K Alostaz ekcclaal8@...> wrote: > Hi everyone, sorry ive gone missing a f ew days, its > been a nightmare , but w hats new? First I will say > Im so glad Darlene and Tracie have had good > infusions and been able to rest up afterwards! I > hope that things get better over the next few days > and you feel more energetic. Glad you ddint ave any > troubles. > > my laptop is not working at all anymore almost so > its hard for me to get here and i am very behind on > teh posts. > > I have continued to have this excrutiating pain in > the chest/right abdomen/back, as it went on it was > clear it was worst and concentrating in the right > back and right side of abdomen , especially off the > right spine, it has been awful pain, keeping me > awake at night. which caused my seizures to be > worse and on and on. i went back to the private > clinic a few days ago. he thought it was > gallbladder maybe. but when he went pressing and > pushing the pain was so severe i had a fairly bad > seizure afterward. what a story. ive been holding > my back and side in pain for hese days. kind of > burning nad itching too, but the pain was the main > thing. unbearable. i had two seizures there that > day and he refused to let me stay there even for > evaluations , ultrasounds etc. , and sent me tot he > public hospital, where no matter the pain killers > they gave me the pain persisted in my right back off > my spine. they did the blood work for gallbladder > but decided things didnt seem to > be an emergency. i was drugged loopy but still in > so much pain. they gave me ultrasound appt for > gallladder in three weeks or so. so i went back to > the private clinic the next morning, yesterday, to > try to get them to do the ultrasound at least. > which their surgeon agreed to do. it showed > multiple polyps or possible impacted stomes but not > blockng the ducts, so they didnt think this was > causing the pain. so he decides maybe its an > ulcer??? and does an endoscopy. in the mean time > when i got home from the hospital the night before i > asked my son to please see what was wwrong with my > back cause it was killing me on my right spine, > burning and itching and feeling swollen and > soemthing wrong wh ere the pain was. he said there > was a rash like pimples but not really. no one > bothered to look at my back at either hospital, they > just reach and push and make me feel excruciating > pain. and i cant see it. i could feel it and on my > side and under my right breast, there is > also some weird rash thats realy bugging me, but i > figured they would surely say something if it was > involved in anyway??? riht??? well the endoscopy > showed some pretty bad esophagal and duodenal > erosion but no ulcer at this point. so they said > they cant explain this horrid pain. the pain was > worst than ever last night, despite my pain killers, > antispasmatics, increased stomach meds, etc.... the > rash was worst as well...and i finaly caught on > myself..... today i went to the neuro and had to > lift up the shirt and show them and ask does this > look like anything to you? does the pain have > anything to do with this??? and they said adfter a > few minues silence its shingles.... just what i > needed. i kept saying to every dr even that i had > just had the remicade the days before, they should > know to look for this. i am so sickened. they > should know to look at the skin. now i have went > how many days without treatment and horrid horrid > pain and paid so much money > for tests that were unnecesary, money i honesstly > really needed and have no way to make up at all. > now they gave me acyliclvor cream only..... so is > this okay? or dont i need the oral tablets to > prevent trouble in the long run?? > > lets all play dr now. is the cream okay or do i > need the tablets or is it just plain too late to do > any good now anyway because its been since thursday > night i think that this pain started? > > what else can go wrong? now i hve heart valve > damage, and shingles, i learned of the stomach > troubles, and the polyps or stones ..... > > and the ridiculous polyps in the gallbladder, that > might or might not be stones , no one can decide, > since they arent blocking any ducts, can i ignore > them? they havent caused any trouble i dotn think, > this is all from the shingles i think. how am i > supposed to know?? > > love you all and sory i am so freaking self > centered these days.... > good news though - one of the drs asked for > baughmans email. and took my tape recording of my > visit from him. though do > i really trust them to do cytoxen? lets get real. > > > take care and love you all > it has to end soon right? lets hope in a > positive way, or at least neutral way, > you are all in my prayers and i cant thank you > enough for yours > > kim > > > --------------------------------- > How low will we go? 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Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Kim I hate to hear how badly your medical situation keeps getting. It's too late at night to call my mother but she just had shingles last year. I'm not sure what else they gave her but I do remember they put her on Neurontin for the nerve pain. I'll try to remember to ask when I talk to her this afternoon. Don't forget you're always in my prayers sweetie. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim, If your on prednisolone you need to have anti-viral treatment in tablets and if you feel unwell while taking them you should be hospitalized for monitoring. Btw I found that calamine lotion helped with the rash Clair x update on kim Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim How low will we go? 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Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim, If your on prednisolone you need to have anti-viral treatment in tablets and if you feel unwell while taking them you should be hospitalized for monitoring. Btw I found that calamine lotion helped with the rash Clair x update on kim Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim How low will we go? 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Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim, If your on prednisolone you need to have anti-viral treatment in tablets and if you feel unwell while taking them you should be hospitalized for monitoring. Btw I found that calamine lotion helped with the rash Clair x update on kim Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim How low will we go? 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Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 OMG, Kim!!! I just can't believe ALL of this!!! Our poor baby... My aunt developed shingles on her head and in her eye xmas day a year ago and is still being treated ... the main treatment for her type of shingles is Neurontin and Oxycontin ... oh, and percocet. I don't think you are taking neurontin any longer ... I would ask the dr. about this for sure ... the burning pain, I would imagine, is nerve pain ... but you know all too well what nerve pain feels like. My aunt used many different types of creams ... I think they may have helped her scalp a bit, but it was the neurontin that helped her eye ... she felt like a knife was stabbing her eye ... it's just been terrible ... she does have more and more good days now. My aunt developed her shingles 10 days after receiving the flu shot ... as did about 5 or 6 others who received the same batch. I tell you, what these doctors and scientists do to us is really scary. When you were first describing your pain, I was thinking kidney stones or gallbladder. I can't believe you have stones on top of all of this, as well!!! I am praying for you all day long every day now ... hourly, if not more ... I cannot get you off my mind at times!!! Love and miss you terribly, Joan P.S. I'm in writing you a private e-mail as soon as I send this one. I will try to log back on soon ... I am going through this strange and annoying phase of having absolutely 0 energy to do anything all day ... then, at night, when everyone is sleeping, I feel like doing things ... but can't interrupt anyone's sleep. I should be on the computer in the day, but for months now, if I am not at doctors ... I've become everything I can't stand ... a lazy person. I just hate it. ... I am sitting with laundry, papers to file, papers to fill out, etc., etc., etc. ... why can't I just get up and do these things while I have plenty of time in the day??? and then, when I read all you do and all you are going through, I am so ashamed of myself. Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim My mother was on 2 antibiotics for her shingles but she can't remember which ones. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim My mother was on 2 antibiotics for her shingles but she can't remember which ones. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Kim My mother was on 2 antibiotics for her shingles but she can't remember which ones. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Dear Kim, I really am sorry about all that has /is going on withj you. I have had shingkles and having many things , U think that is the most painful!! I remember not able to sit and crying because of the pain. My sons once had to oick me up and carry me to bed becauswe i couldn't walk. My advise to you is leave the country and go back to the states where you can get real treatment. The dr.s might find that everytrghing they said there is not true! It's worth the try!!! One of the problems there is the status of the women, and could it be that they just don't want to treat you orsomethng else? When I had shingles, I was given a cream and it went away in about 2 weeks or so. It was soo expensive and luckily I had to pay only part of the cost. I hope all this will pass quickley and you'll be able to get on with things. Get a second opinion on everything! Moish [Voiced Pomy] Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: update on kimDate: Wed, 12 Apr 2006 01:20:04 -0700 (PDT) Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Dear Kim, I really am sorry about all that has /is going on withj you. I have had shingkles and having many things , U think that is the most painful!! I remember not able to sit and crying because of the pain. My sons once had to oick me up and carry me to bed becauswe i couldn't walk. My advise to you is leave the country and go back to the states where you can get real treatment. The dr.s might find that everytrghing they said there is not true! It's worth the try!!! One of the problems there is the status of the women, and could it be that they just don't want to treat you orsomethng else? When I had shingles, I was given a cream and it went away in about 2 weeks or so. It was soo expensive and luckily I had to pay only part of the cost. I hope all this will pass quickley and you'll be able to get on with things. Get a second opinion on everything! Moish [Voiced Pomy] Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: update on kimDate: Wed, 12 Apr 2006 01:20:04 -0700 (PDT) Hi everyone, sorry ive gone missing a f ew days, its been a nightmare , but w hats new? First I will say Im so glad Darlene and Tracie have had good infusions and been able to rest up afterwards! I hope that things get better over the next few days and you feel more energetic. Glad you ddint ave any troubles. my laptop is not working at all anymore almost so its hard for me to get here and i am very behind on teh posts. I have continued to have this excrutiating pain in the chest/right abdomen/back, as it went on it was clear it was worst and concentrating in the right back and right side of abdomen , especially off the right spine, it has been awful pain, keeping me awake at night. which caused my seizures to be worse and on and on. i went back to the private clinic a few days ago. he thought it was gallbladder maybe. but when he went pressing and pushing the pain was so severe i had a fairly bad seizure afterward. what a story. ive been holding my back and side in pain for hese days. kind of burning nad itching too, but the pain was the main thing. unbearable. i had two seizures there that day and he refused to let me stay there even for evaluations , ultrasounds etc. , and sent me tot he public hospital, where no matter the pain killers they gave me the pain persisted in my right back off my spine. they did the blood work for gallbladder but decided things didnt seem to be an emergency. i was drugged loopy but still in so much pain. they gave me ultrasound appt for gallladder in three weeks or so. so i went back to the private clinic the next morning, yesterday, to try to get them to do the ultrasound at least. which their surgeon agreed to do. it showed multiple polyps or possible impacted stomes but not blockng the ducts, so they didnt think this was causing the pain. so he decides maybe its an ulcer??? and does an endoscopy. in the mean time when i got home from the hospital the night before i asked my son to please see what was wwrong with my back cause it was killing me on my right spine, burning and itching and feeling swollen and soemthing wrong wh ere the pain was. he said there was a rash like pimples but not really. no one bothered to look at my back at either hospital, they just reach and push and make me feel excruciating pain. and i cant see it. i could feel it and on my side and under my right breast, there is also some weird rash thats realy bugging me, but i figured they would surely say something if it was involved in anyway??? riht??? well the endoscopy showed some pretty bad esophagal and duodenal erosion but no ulcer at this point. so they said they cant explain this horrid pain. the pain was worst than ever last night, despite my pain killers, antispasmatics, increased stomach meds, etc.... the rash was worst as well...and i finaly caught on myself..... today i went to the neuro and had to lift up the shirt and show them and ask does this look like anything to you? does the pain have anything to do with this??? and they said adfter a few minues silence its shingles.... just what i needed. i kept saying to every dr even that i had just had the remicade the days before, they should know to look for this. i am so sickened. they should know to look at the skin. now i have went how many days without treatment and horrid horrid pain and paid so much money for tests that were unnecesary, money i honesstly really needed and have no way to make up at all. now they gave me acyliclvor cream only..... so is this okay? or dont i need the oral tablets to prevent trouble in the long run?? lets all play dr now. is the cream okay or do i need the tablets or is it just plain too late to do any good now anyway because its been since thursday night i think that this pain started? what else can go wrong? now i hve heart valve damage, and shingles, i learned of the stomach troubles, and the polyps or stones ..... and the ridiculous polyps in the gallbladder, that might or might not be stones , no one can decide, since they arent blocking any ducts, can i ignore them? they havent caused any trouble i dotn think, this is all from the shingles i think. how am i supposed to know?? love you all and sory i am so freaking self centered these days.... good news though - one of the drs asked for baughmans email. and took my tape recording of my visit from him. though do i really trust them to do cytoxen? lets get real. take care and love you all it has to end soon right? lets hope in a positive way, or at least neutral way, you are all in my prayers and i cant thank you enough for yours kim How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Dear Claire, thanks for the reply. ive not been on prednisone for some time now, im on other immunosuppresents. The Dr acted like it was no big deal kind of and what did i expect her to do for me for shingles?? She told me to come back on Saturday and she would check them again, it was Wednesday that i was seeing her, but then saturday was a major holiday here and no one wasin hte hospital of course. she sauid something about giving me prednisone FOR THE SHINGLES MAYBE??? does that make sense? because i havent seen that written anywhere. well take care and thanks for writing. Kim ns moderator Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Hi Kim, Im sorry youre in so much pain shingles is HORRIBLE im dont know what medication I was given just that is was an oral anti-viral and when I started to feel unwell they put me in hospital. Being hot makes it worse so maybe try a cold flannel and calamine lotion did help calm it down for me. Ive not heard of pred being used for shingles and it is supposed to be very drangerous to be on pred and have shingles which is why they monitored me closely, I should go and see your dr asap and make sure they know its spreading ! I hope you start feeling better soon. Clair Re: update on kim Dear Claire, thanks for the reply. ive not been on prednisone for some time now, im on other immunosuppresents. The Dr acted like it was no big deal kind of and what did i expect her to do for me for shingles?? She told me to come back on Saturday and she would check them again, it was Wednesday that i was seeing her, but then saturday was a major holiday here and no one wasin hte hospital of course. she sauid something about giving me prednisone FOR THE SHINGLES MAYBE??? does that make sense? because i havent seen that written anywhere. well take care and thanks for writing. Kim ns moderator Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Kim, Just wanted to let you know my Mom has the shingles on her face. They gave her prednisone so it would not spread into her eye. She is 83 and it has been really hard on her. I hope things improve for you soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Kim- you have been so great in being supportive of everyone on this line over the past year i just wish we could do more for u- just know that we really care about u and that u are in our thoughts for a full and complete recovery from all your illnessess- MATT --- K Alostaz ekcclaal8@...> wrote: > Dear Matt, > > Thanks for taking time to write, I know you have > had your own " complications " going on lately too. I > appreciate you taking time to write me and think of > me. Though Ive not been online more, know that I > hve been thinking of you during these past weeks. > Hang in there and as i have said before, thanks for > all the support you offer everyone here in the > group. > > take care > kim > ns moderator > > > --------------------------------- > Blab-away for as little as 1¢/min. Make PC-to-Phone > Calls using Yahoo! Messenger with Voice. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Kim- you have been so great in being supportive of everyone on this line over the past year i just wish we could do more for u- just know that we really care about u and that u are in our thoughts for a full and complete recovery from all your illnessess- MATT --- K Alostaz ekcclaal8@...> wrote: > Dear Matt, > > Thanks for taking time to write, I know you have > had your own " complications " going on lately too. I > appreciate you taking time to write me and think of > me. Though Ive not been online more, know that I > hve been thinking of you during these past weeks. > Hang in there and as i have said before, thanks for > all the support you offer everyone here in the > group. > > take care > kim > ns moderator > > > --------------------------------- > Blab-away for as little as 1¢/min. Make PC-to-Phone > Calls using Yahoo! Messenger with Voice. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Kim- you have been so great in being supportive of everyone on this line over the past year i just wish we could do more for u- just know that we really care about u and that u are in our thoughts for a full and complete recovery from all your illnessess- MATT --- K Alostaz ekcclaal8@...> wrote: > Dear Matt, > > Thanks for taking time to write, I know you have > had your own " complications " going on lately too. I > appreciate you taking time to write me and think of > me. Though Ive not been online more, know that I > hve been thinking of you during these past weeks. > Hang in there and as i have said before, thanks for > all the support you offer everyone here in the > group. > > take care > kim > ns moderator > > > --------------------------------- > Blab-away for as little as 1¢/min. Make PC-to-Phone > Calls using Yahoo! Messenger with Voice. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 , thanks for writing, and sorry your mom is having a time of things with shingles. I hope thtey have made her problems more comfortable than they are making it for me. Its good to know that they have used pred. for shingles for someone. Ive found mixed info on the net actually. nothing good and solid but then i havent really searched a whole lot between my computer trouble and not feeling too well. how are you? its been a while since we heard from you? give us an update, though im behind on posts if you already have. take care kim ns moderator Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 , thanks for writing, and sorry your mom is having a time of things with shingles. I hope thtey have made her problems more comfortable than they are making it for me. Its good to know that they have used pred. for shingles for someone. Ive found mixed info on the net actually. nothing good and solid but then i havent really searched a whole lot between my computer trouble and not feeling too well. how are you? its been a while since we heard from you? give us an update, though im behind on posts if you already have. take care kim ns moderator Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day Quote Link to comment Share on other sites More sharing options...
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