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#1
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UPDATE: My Medical Stuff (long but okay)
Thanks for reading this long and probably boring story. I'll try to be more entertaining next time I get sick. :-) Actually - it was good reading - as i was sitting here earlier tonight thinking we have not heard from Kathy about the Dr Visit. re stoic -- my mom too - if she says she hurts-- man - she hurts. medical people do not understand this either - AND it led to injury in PT -- please say "ow" - when it hurts .... now - there was nothing CRISIS in his seeing you - and, just like I thought - he wanted to TREAT YOU. good - maybe you have found a source to tie all of this together and get some results.... about time..... hope things get better - and - as I emailed you before - the electro stimulation things should definitely be on the "list " of alternatives... Cheryl DRAGON BEADS Flameworked beads and glass http://www.dragonbeads.com/ |
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#2
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Kathy, I am SO SO SO glad you found a good docter today. I want to hug and
kiss that man for you. I'm also happy to read that all the things you consider worse than death have been ruled out. That must have taken at least a little weight off your chest...made it a bit easier to breathe? I just wish none of it was happening at all, and that you could be made a stronger person in less painful ways I've always wondered about those neuro implants. I've always considered pain to be my body's warning system, and I'd worry if I were incapable of feeling that. I'm sure you'll spend lots of time thinking about what to do regarding getting one. Yes, Bob deserved that smack...a lot Sounds like something my dad would say...lol. I have this feeling that your family would get along well with mine Here's some big hugs *HUGS* for taking your muscle test without flinching--you are a far stronger woman than I--I was 14 when I had it done, also on my legs, and let's just say that flinching doesn't even begin to cover what I did I hope your night goes well, and that you can rest easier. After all kinds of tests and worrying, I went to the doctor this afternoon. Good news for a change - the doc has ruled out most of the horrible diagnoses, although as we suspected the nerves in my left leg are dead/dying/don't process stimuli in a normal way. They might regenerate, but probably won't, since this is (likely) caused by steroids. I go for bone scans and other tests next week. Right now, the doc is much more concerned with finding a solution to the pain than a label for the condition. He did say that there may not ever be a single condition we can point to for the pain - it's just too complicated. The leg will likely continue to wither, but as soon as the diagnosis is a little more defined, I'll be back at PT every day to try and delay/prevent/reverse any withering, and to keep me walking as long as possible. It's still not clear if the hip is dead - there's a lot of fluid built up in the hip joints, which has to go, but it probably isn't the root cause of the pain. The osteoporosis I have is complicating matters, too. One thing we're going to have to keep track of is my height. I seem to be getting shorter, which isn't good. The main suspect is lots of little spinal fractures and dessicated discs. Again, it's the osteoporosis. feh. I get the feeling I'm going to be a midget before all this is over. The Neurontin he initially prescribed is starting to show some signs of working - I can wiggle my toes, and almost was able to stand on tiptoe for a moment. (Big improvement from only two weeks ago) I feel more flexible, and have had none of the scary side effects I'd read about. I've also been prescribed a non sedating muscle relaxant, which is supposed to work with the Neurontin to make everything less twitchy and sensitive. I have some sort of hyper-sensitive reactions that can cause pain. He also wants me to stay on the pain meds as long as I need them, and was even willing to give me stronger stuff (which I refused. I don't need it yet, and hopefully won't need it at all) The doc kept commenting on how I was so stoic during the test where they run current through the muscles. I never blinked, because on the scale of my daily pain, that test was at about mosquito bite level. He called my primary care doc and told him that if I complain about pain that he had best take me seriously - I have the highest pain tolerance he's seen in a very long time. He also had a long talk with him about prescribing pain meds, and that I had been undermedicated and suffering. Sounds like the primary care doc is either going to toe the line or toss me out of his practice - we'll see what happens next. (I suspect the toss, because our insurance pays docs a fixed fee per patient - it's called capitation, and he's losing big dollars every time he sees me) Today's doc did ask me to think about some of the neuro-stimulator types of devices, because an implant to stop the pain receptors from communicating to the brain would be by far the best solution - much more so than a lifetime of narcotics. I have a choice, because of my age. We'd be talking about having a device that will need replacement several times over my lifetime. Same with a hip replacement, if I end up with one. They don't last forever. Bob wanted to know if he could have the old ones after they were removed, so he could show people where all our money goes. (He got a smack) We'll talk about them next time, after I've had the next round of tests. One off the wall diagnosis he mentioned was the possibility of steroid induced bone infection - it's rare, but can cause all of these symptoms. The muscular stuff is definitely steroid neuropathy, but the bone stuff might be curable with long term, heavy duty IV anti-biotics. Oh yay. I feel a lot better. All the horrible worse than death things are ruled out, and the doc is willing to treat the symptoms even if he doesn't have a perfect textbook label for the problem. I'll get to go back to my two PT guys, whom I love, and will maybe even be able to exercise a bit to drop some weight. (A girl can dream, can't she?) I want to ask about using a pool to help move, and see if I can do that. Perhaps having the water bear my weight will make things easier. Heck, I'm willing to try it. Thanks for reading this long and probably boring story. I'll try to be more entertaining next time I get sick. :-) Kathy N-V ~Candace~ Orphan Beads Low cost and bartering for the financially challenged beader http://snipurl.com/6s4t |
#3
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Now I'm getting scared. I'm having the emg muscle thingy with the shocky
things in the muscles on the 29th of June. Is it that bad? Does it hurt? -- Debbie (New Mexico) Life isn't a matter of milestones, but of moments. - Rose Kennedy "Candace" wrote in message ... Kathy, I am SO SO SO glad you found a good docter today. I want to hug and kiss that man for you. I'm also happy to read that all the things you consider worse than death have been ruled out. That must have taken at least a little weight off your chest...made it a bit easier to breathe? I just wish none of it was happening at all, and that you could be made a stronger person in less painful ways I've always wondered about those neuro implants. I've always considered pain to be my body's warning system, and I'd worry if I were incapable of feeling that. I'm sure you'll spend lots of time thinking about what to do regarding getting one. Yes, Bob deserved that smack...a lot Sounds like something my dad would say...lol. I have this feeling that your family would get along well with mine Here's some big hugs *HUGS* for taking your muscle test without flinching--you are a far stronger woman than I--I was 14 when I had it done, also on my legs, and let's just say that flinching doesn't even begin to cover what I did I hope your night goes well, and that you can rest easier. After all kinds of tests and worrying, I went to the doctor this afternoon. Good news for a change - the doc has ruled out most of the horrible diagnoses, although as we suspected the nerves in my left leg are dead/dying/don't process stimuli in a normal way. They might regenerate, but probably won't, since this is (likely) caused by steroids. I go for bone scans and other tests next week. Right now, the doc is much more concerned with finding a solution to the pain than a label for the condition. He did say that there may not ever be a single condition we can point to for the pain - it's just too complicated. The leg will likely continue to wither, but as soon as the diagnosis is a little more defined, I'll be back at PT every day to try and delay/prevent/reverse any withering, and to keep me walking as long as possible. It's still not clear if the hip is dead - there's a lot of fluid built up in the hip joints, which has to go, but it probably isn't the root cause of the pain. The osteoporosis I have is complicating matters, too. One thing we're going to have to keep track of is my height. I seem to be getting shorter, which isn't good. The main suspect is lots of little spinal fractures and dessicated discs. Again, it's the osteoporosis. feh. I get the feeling I'm going to be a midget before all this is over. The Neurontin he initially prescribed is starting to show some signs of working - I can wiggle my toes, and almost was able to stand on tiptoe for a moment. (Big improvement from only two weeks ago) I feel more flexible, and have had none of the scary side effects I'd read about. I've also been prescribed a non sedating muscle relaxant, which is supposed to work with the Neurontin to make everything less twitchy and sensitive. I have some sort of hyper-sensitive reactions that can cause pain. He also wants me to stay on the pain meds as long as I need them, and was even willing to give me stronger stuff (which I refused. I don't need it yet, and hopefully won't need it at all) The doc kept commenting on how I was so stoic during the test where they run current through the muscles. I never blinked, because on the scale of my daily pain, that test was at about mosquito bite level. He called my primary care doc and told him that if I complain about pain that he had best take me seriously - I have the highest pain tolerance he's seen in a very long time. He also had a long talk with him about prescribing pain meds, and that I had been undermedicated and suffering. Sounds like the primary care doc is either going to toe the line or toss me out of his practice - we'll see what happens next. (I suspect the toss, because our insurance pays docs a fixed fee per patient - it's called capitation, and he's losing big dollars every time he sees me) Today's doc did ask me to think about some of the neuro-stimulator types of devices, because an implant to stop the pain receptors from communicating to the brain would be by far the best solution - much more so than a lifetime of narcotics. I have a choice, because of my age. We'd be talking about having a device that will need replacement several times over my lifetime. Same with a hip replacement, if I end up with one. They don't last forever. Bob wanted to know if he could have the old ones after they were removed, so he could show people where all our money goes. (He got a smack) We'll talk about them next time, after I've had the next round of tests. One off the wall diagnosis he mentioned was the possibility of steroid induced bone infection - it's rare, but can cause all of these symptoms. The muscular stuff is definitely steroid neuropathy, but the bone stuff might be curable with long term, heavy duty IV anti-biotics. Oh yay. I feel a lot better. All the horrible worse than death things are ruled out, and the doc is willing to treat the symptoms even if he doesn't have a perfect textbook label for the problem. I'll get to go back to my two PT guys, whom I love, and will maybe even be able to exercise a bit to drop some weight. (A girl can dream, can't she?) I want to ask about using a pool to help move, and see if I can do that. Perhaps having the water bear my weight will make things easier. Heck, I'm willing to try it. Thanks for reading this long and probably boring story. I'll try to be more entertaining next time I get sick. :-) Kathy N-V ~Candace~ Orphan Beads Low cost and bartering for the financially challenged beader http://snipurl.com/6s4t --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.707 / Virus Database: 463 - Release Date: 6/17/2004 |
#4
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Kathy,
SO glad to hear the mostly good news!!!!!! Hope you get some good sleep tonight. marisa2 Kathy N-V wrote: After all kinds of tests and worrying, I went to the doctor this afternoon. Good news for a change - the doc has ruled out most of the horrible diagnoses, although as we suspected the nerves in my left leg are dead/dying/don't process stimuli in a normal way. They might regenerate, but probably won't, since this is (likely) caused by steroids. I go for bone scans and other tests next week. Right now, the doc is much more concerned with finding a solution to the pain than a label for the condition. He did say that there may not ever be a single condition we can point to for the pain - it's just too complicated. The leg will likely continue to wither, but as soon as the diagnosis is a little more defined, I'll be back at PT every day to try and delay/prevent/reverse any withering, and to keep me walking as long as possible. It's still not clear if the hip is dead - there's a lot of fluid built up in the hip joints, which has to go, but it probably isn't the root cause of the pain. The osteoporosis I have is complicating matters, too. One thing we're going to have to keep track of is my height. I seem to be getting shorter, which isn't good. The main suspect is lots of little spinal fractures and dessicated discs. Again, it's the osteoporosis. feh. I get the feeling I'm going to be a midget before all this is over. The Neurontin he initially prescribed is starting to show some signs of working - I can wiggle my toes, and almost was able to stand on tiptoe for a moment. (Big improvement from only two weeks ago) I feel more flexible, and have had none of the scary side effects I'd read about. I've also been prescribed a non sedating muscle relaxant, which is supposed to work with the Neurontin to make everything less twitchy and sensitive. I have some sort of hyper-sensitive reactions that can cause pain. He also wants me to stay on the pain meds as long as I need them, and was even willing to give me stronger stuff (which I refused. I don't need it yet, and hopefully won't need it at all) The doc kept commenting on how I was so stoic during the test where they run current through the muscles. I never blinked, because on the scale of my daily pain, that test was at about mosquito bite level. He called my primary care doc and told him that if I complain about pain that he had best take me seriously - I have the highest pain tolerance he's seen in a very long time. He also had a long talk with him about prescribing pain meds, and that I had been undermedicated and suffering. Sounds like the primary care doc is either going to toe the line or toss me out of his practice - we'll see what happens next. (I suspect the toss, because our insurance pays docs a fixed fee per patient - it's called capitation, and he's losing big dollars every time he sees me) Today's doc did ask me to think about some of the neuro-stimulator types of devices, because an implant to stop the pain receptors from communicating to the brain would be by far the best solution - much more so than a lifetime of narcotics. I have a choice, because of my age. We'd be talking about having a device that will need replacement several times over my lifetime. Same with a hip replacement, if I end up with one. They don't last forever. Bob wanted to know if he could have the old ones after they were removed, so he could show people where all our money goes. (He got a smack) We'll talk about them next time, after I've had the next round of tests. One off the wall diagnosis he mentioned was the possibility of steroid induced bone infection - it's rare, but can cause all of these symptoms. The muscular stuff is definitely steroid neuropathy, but the bone stuff might be curable with long term, heavy duty IV anti-biotics. Oh yay. I feel a lot better. All the horrible worse than death things are ruled out, and the doc is willing to treat the symptoms even if he doesn't have a perfect textbook label for the problem. I'll get to go back to my two PT guys, whom I love, and will maybe even be able to exercise a bit to drop some weight. (A girl can dream, can't she?) I want to ask about using a pool to help move, and see if I can do that. Perhaps having the water bear my weight will make things easier. Heck, I'm willing to try it. Thanks for reading this long and probably boring story. I'll try to be more entertaining next time I get sick. :-) Kathy N-V -- ================================================== ============= Teva Yafae Original Designs inspired by nature For unique jewelry or apparel, or to learn about having your own Jewelry home-party or children's party, please visit: http://www.tevayafae.com ================================================== ============= |
#5
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Just wanted to let you know I'm happy it wasn't horrible news like you were
fearing. Not exactly good but not the worst you could imagine. And I know what you mean about having a high pain tolerance. Take Care, Helen C |
#6
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So, Kathy, what are you going to do to be entertaining next time you're
sick. No, come to think about, don't tell me. I'm glad you have a doctor who understands your pain. Is at least on the same page as you are. I've heard of the implanted pulsers, but never needed to learn more about them, than that they exist. That Neurontin is supposed to be unusually good for a range of things. Glad you seem to be responsive to it. It's funny how drugs work. I do real well on Codeine, while some stronger families of drugs (like Darvon, etc) make me hallucinate and stuff but do no better with the pain. It's such an individual thing. The thing that helps Pete is PT (deep tissue of a particular style) and strengthening with swimming. Hope the swimming will work out well for you. Take care, Tina "Kathy N-V" wrote in message .com... After all kinds of tests and worrying, I went to the doctor this afternoon. Good news for a change - the doc has ruled out most of the horrible diagnoses, although as we suspected the nerves in my left leg are dead/dying/don't process stimuli in a normal way. They might regenerate, but probably won't, since this is (likely) caused by steroids. I go for bone scans and other tests next week. Right now, the doc is much more concerned with finding a solution to the pain than a label for the condition. He did say that there may not ever be a single condition we can point to for the pain - it's just too complicated. The leg will likely continue to wither, but as soon as the diagnosis is a little more defined, I'll be back at PT every day to try and delay/prevent/reverse any withering, and to keep me walking as long as possible. It's still not clear if the hip is dead - there's a lot of fluid built up in the hip joints, which has to go, but it probably isn't the root cause of the pain. The osteoporosis I have is complicating matters, too. One thing we're going to have to keep track of is my height. I seem to be getting shorter, which isn't good. The main suspect is lots of little spinal fractures and dessicated discs. Again, it's the osteoporosis. feh. I get the feeling I'm going to be a midget before all this is over. The Neurontin he initially prescribed is starting to show some signs of working - I can wiggle my toes, and almost was able to stand on tiptoe for a moment. (Big improvement from only two weeks ago) I feel more flexible, and have had none of the scary side effects I'd read about. I've also been prescribed a non sedating muscle relaxant, which is supposed to work with the Neurontin to make everything less twitchy and sensitive. I have some sort of hyper-sensitive reactions that can cause pain. He also wants me to stay on the pain meds as long as I need them, and was even willing to give me stronger stuff (which I refused. I don't need it yet, and hopefully won't need it at all) The doc kept commenting on how I was so stoic during the test where they run current through the muscles. I never blinked, because on the scale of my daily pain, that test was at about mosquito bite level. He called my primary care doc and told him that if I complain about pain that he had best take me seriously - I have the highest pain tolerance he's seen in a very long time. He also had a long talk with him about prescribing pain meds, and that I had been undermedicated and suffering. Sounds like the primary care doc is either going to toe the line or toss me out of his practice - we'll see what happens next. (I suspect the toss, because our insurance pays docs a fixed fee per patient - it's called capitation, and he's losing big dollars every time he sees me) Today's doc did ask me to think about some of the neuro-stimulator types of devices, because an implant to stop the pain receptors from communicating to the brain would be by far the best solution - much more so than a lifetime of narcotics. I have a choice, because of my age. We'd be talking about having a device that will need replacement several times over my lifetime. Same with a hip replacement, if I end up with one. They don't last forever. Bob wanted to know if he could have the old ones after they were removed, so he could show people where all our money goes. (He got a smack) We'll talk about them next time, after I've had the next round of tests. One off the wall diagnosis he mentioned was the possibility of steroid induced bone infection - it's rare, but can cause all of these symptoms. The muscular stuff is definitely steroid neuropathy, but the bone stuff might be curable with long term, heavy duty IV anti-biotics. Oh yay. I feel a lot better. All the horrible worse than death things are ruled out, and the doc is willing to treat the symptoms even if he doesn't have a perfect textbook label for the problem. I'll get to go back to my two PT guys, whom I love, and will maybe even be able to exercise a bit to drop some weight. (A girl can dream, can't she?) I want to ask about using a pool to help move, and see if I can do that. Perhaps having the water bear my weight will make things easier. Heck, I'm willing to try it. Thanks for reading this long and probably boring story. I'll try to be more entertaining next time I get sick. :-) Kathy N-V |
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#8
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Kathy,
Glad you got some good news. Swimming is excellent exercise for muscular problems. If you can't swim, you can get some water shoes and walk in the water and do exercises. A lot of pools have water exercise classes for people with arthrititis as well. I've learned that swimming is an excellent way to control your stress, cool your body temperature for hours afterwards, and feed your spirit at the same time. I am determined to get back in the pool (since I broke my foot, it's hard for me to climb the ladders, but I found a pool with steps, yes!) Patti |
#9
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Having Hydrotheraphy in the pool is a really good idea. I'm a lifeguard so
I hear about peoples experiences with things like that and most people say it's great! I've had it in the past too for my knees as well - definatly try and sign up for it! Charlie. "Kathy N-V" wrote in message .com... After all kinds of tests and worrying, I went to the doctor this afternoon. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.707 / Virus Database: 463 - Release Date: 15/06/2004 |
#10
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Never boring, Kathy. In fact, I find this exciting. If infection in the bone is
being looked at, you may wish to talk to your doctor about the possibility of large dose vitamin C given IV. Its generally between 50 and 100Grams, and can't be tolerated orally--but has been used to knock out serious systemic viral infections such as West Nile and Hepatitis C, and more, and is effective in ptherwise non-responsive infections. Also, eat raw garlic every day!! Have some on toast! Sarajane Sarajane's Polymer Clay Gallery http://www.polyclay.com |
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