Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 I wouldn't get too worried about what your Dr thinks, I keep the Journal for two reasons. The first is to let them see that I am not abusing the medication, which you are not either. My second purpose was that if they ever noticed I was going through the meds more frequently I'd like them to be aware of it as I have no desire to become hooked on this stuff. Granted, I am on as strong of pain meds as one can get. I have roxicodone 15mg (instant release for sharp pain that usually works)....OxyContin 40mg that I generally only use in the winter and Dilaudid for my headaches. It took them 6 years to give me a script for Dilaudid but that has kept me out of the resort for headaches, which are indescribable and far beyond any level of pain anyone should ever have to deal with!!! Considering I was hospitalized 35 times in a shade over 5 years for headaches alone will give you n idea of how bad they are. Smashing my head as hard as I can off of a block wall actually feels better than the pain. the pain is also not like a regular headache, as it is on top of and right behind my eyes...it actually feels as if something is ramming my eyes out of my skull, yet after more than a dozen MRI/MRA/Cat Scans/EEC's and the like and three separate Neuro Opthomologists (spelling??) no one can figure out why, but it started the first time I got hit with the fluctuating fevers and has never left. I was down at Jefferson University for 13 days (hospitalized) under the care of Dr. Wm Young (OUTSTANDING!!!!) and came out with a diagnosis of " New Daily Persistent Headache " . Joy oh ******** JOY! I am lucky if I can go two days in a row without a headache, but I have become pretty used to them and only have to take the pills when they get to the point that I can no longer stand them. I also get double/quadruple vision, things appear to be moving that aren't, etc..... It sure as hell is not fun. The worst part is that I can't predict nor stop them no matter what. I tried the water cure and numerous dietary changes to no avail. I am pretty much going to have to deal with them until they spread my ashes from my boat on the Susquehanna River over my favorite area. LOL. Being that you are already on some form of a pain med, I highly doubt that your Dr. wouldn't work with you to get you the most effective treatment for you. Best of luck, Kirk. > ** > > > Thank you, Kirk. I have been keeping a journal...just for the last two > weeks, but I have been keeping one. I will highlight go through it and > highlight each time I had to take a lortab which I only think is about 10 > or > so, but that's just when the pain is so intense I just can't stand it any > longer. I HATE taking them, and I have told my doctor that on more than > one > occassion. I don't think he is concerned about me taking them too often. I > guess there is just a part of me that. Feels like I am doing something > wrong > asking for pain meds, but I do have to do something...I just can't keep > going on like this...I won't keep going if I do. Thank you for posting > about > the journal. I think I will continue doing it. It's a good idea. > > April > > Sent from my Verizon Wireless Phone > > Re: need advice > > April, I (and many others on this list) have been in your shoes, and many > still are. I feel the most important thing is to be up front and honest > with your Dr.....which you should be all of the time regardless. I have > come across some Dr's who will not issue pain meds, and I don't argue as I > can get them from either my PCP or my Pain Specialist. > So long as you are up front and honest, you should not have much of a > problem. One thing I found to be re-assuring to all of my Dr's was to keep > a journal of when I took pain med(s) and the reason. Once they saw a > pattern where I wasn't relying on them every hour of every day they no > longer have any questions. I average a refill every 3 months....a little > closer to 4 in the summer and closer to 2 in the winter between refills, > and that has been consistent for 8 years. > IF you have a Dr that will not issue pain meds no matter what than I > advise you to find another Dr or see a pain management specialist. They > most likely are going to start you off with the lightest duty med that they > feel they can and will adjust until both you and the Dr are satisfied. that > can be a tough road to be on but it will eventually get you where you need > to be. > Good luck, Kirk. > > > > > ** > > > > > > I would like advice from anyone and everyone. I am goin to the doctor > > Thursday, my primary. I want to ask for pain medicine, but I am not sure > > how to ask exactly. I don't have a constant pain med I take daily but I > > definately need something. I have a plethera of conditions that cause a > > great deal of pain and OTC options have run their coarse. On a rare > > occassion asprin still helps a little for some headaches. Stills causes > > joint pain, but that is much better since I have been on the MTX > injections > > instead of the pills. I also take Kineret. I also have nerve pain from a > > pinched nerve in my hip. I have migraines. I have fybro. I have something > > wrong with my neck, upper spine and lumbar spine. There is also something > > wrong with my left hip that I think is different from the pinched nerve. > I > > plan on bringing all these things up with my doctor and telling him he > MUST > > address these issues AND my pain. I do see a nuerologist for the > migraines, > > and he is just starting to delve into the nerve issues. But I am just not > > sure how to address the pain med issue. He gave me lortab acouple weeks > ago > > when my back gave out. So bad I could not walk, but it was just to treat > > the " acute " symptoms. I can suck it up and deal with the pain better than > > just about anybody I know, but it is more than I can bare anymore. I do > not > > want something that makes me loopy. I still want to work. I need to work, > > and I feel like I can...if I can keep my pain under control. I don't want > > something that is addictive. My kidneys are not filtering properly. That > > has been showing up on my bloodwork recently, so that has to be taken > into > > account, too. I plan to ask my RD about that on my next visit as I don't > > know how bad theyn are, just that they aren't working right. My primary > > doctor said due to the kidneys I should probably stop taking my mobic. He > > was concerned about that affecting my arthritis symptoms, though. I just > > stopped to see what happened and did not notice any difference at all > after > > a week and a half, so I don't really see any point in taking the Mobic. > > > > April > > > > PS > > > > I'm the one with the weird messed up emails, so my respones to the group > > will be from my raincoin@... address...sorry. > > > > > > > > -- > Everything in life sucks except things that should! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Hi April with the messed up emails, Glad that is all straightened out for you. What is hard is having the confidence to stand up to the doctors sometimes. They are authority figures and we make them high up in our minds to the point that we can get intimidated. Also we are afraid of that ever stomach stabbing feeling of rejection and how to defend ourselves if this or that which we had anticipated is not what the doctor’s answer is. There are a couple of ways you can handle it depending on your personality and how you communicate. For me, I am much better putting my thoughts down in writing. I don’t do as well putting my thoughts into words and speaking them. I’ve written a letter or in notes form of my ideas and handed it to the doctor to read to himself and then had a conversation about it. I’ve also brought my list, rehearsed of course, to the doctor with what I wanted to say and what I’d say if the doctor said certain things about how I’d respond. I read off my list to the doctor with real feelings about how my lifestyle is affected by the pain. What the limitations are in my life from pain. I creatively write what the pain feels like and where it is located, how long it lasts, how often I get it. It helps to be prepared either way and gather your thoughts ahead of time so you can be effective in getting a doctor who does not know you, get to have some idea of you as a person and what your personal life is like and how it is affected by your symptoms. You can then say, I should not and do not deserve this pain, and I will be needing something that will help me live a better quality of life as I cannot go on like this much longer. Let the doctor know how discouraging it is and depressing and how your outlook has changed for the worse and how you are loosing hope if that is how you feel. Usually these are all normal parts of having pain. For me it is also so distracting that I am very tired out form focusing on the pain. It begins to rule my life and I should run my life. What ever works best for you April. I’m only here to offer what has helped me in the past and want to see you have help as we all deserve better quality of life than with so much pain. Take care, Let me know the outcome, From: April Sent: Sunday, March 25, 2012 8:20 PM To: Stillsdisease Subject: need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Hi April with the messed up emails, Glad that is all straightened out for you. What is hard is having the confidence to stand up to the doctors sometimes. They are authority figures and we make them high up in our minds to the point that we can get intimidated. Also we are afraid of that ever stomach stabbing feeling of rejection and how to defend ourselves if this or that which we had anticipated is not what the doctor’s answer is. There are a couple of ways you can handle it depending on your personality and how you communicate. For me, I am much better putting my thoughts down in writing. I don’t do as well putting my thoughts into words and speaking them. I’ve written a letter or in notes form of my ideas and handed it to the doctor to read to himself and then had a conversation about it. I’ve also brought my list, rehearsed of course, to the doctor with what I wanted to say and what I’d say if the doctor said certain things about how I’d respond. I read off my list to the doctor with real feelings about how my lifestyle is affected by the pain. What the limitations are in my life from pain. I creatively write what the pain feels like and where it is located, how long it lasts, how often I get it. It helps to be prepared either way and gather your thoughts ahead of time so you can be effective in getting a doctor who does not know you, get to have some idea of you as a person and what your personal life is like and how it is affected by your symptoms. You can then say, I should not and do not deserve this pain, and I will be needing something that will help me live a better quality of life as I cannot go on like this much longer. Let the doctor know how discouraging it is and depressing and how your outlook has changed for the worse and how you are loosing hope if that is how you feel. Usually these are all normal parts of having pain. For me it is also so distracting that I am very tired out form focusing on the pain. It begins to rule my life and I should run my life. What ever works best for you April. I’m only here to offer what has helped me in the past and want to see you have help as we all deserve better quality of life than with so much pain. Take care, Let me know the outcome, From: April Sent: Sunday, March 25, 2012 8:20 PM To: Stillsdisease Subject: need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Hi April with the messed up emails, Glad that is all straightened out for you. What is hard is having the confidence to stand up to the doctors sometimes. They are authority figures and we make them high up in our minds to the point that we can get intimidated. Also we are afraid of that ever stomach stabbing feeling of rejection and how to defend ourselves if this or that which we had anticipated is not what the doctor’s answer is. There are a couple of ways you can handle it depending on your personality and how you communicate. For me, I am much better putting my thoughts down in writing. I don’t do as well putting my thoughts into words and speaking them. I’ve written a letter or in notes form of my ideas and handed it to the doctor to read to himself and then had a conversation about it. I’ve also brought my list, rehearsed of course, to the doctor with what I wanted to say and what I’d say if the doctor said certain things about how I’d respond. I read off my list to the doctor with real feelings about how my lifestyle is affected by the pain. What the limitations are in my life from pain. I creatively write what the pain feels like and where it is located, how long it lasts, how often I get it. It helps to be prepared either way and gather your thoughts ahead of time so you can be effective in getting a doctor who does not know you, get to have some idea of you as a person and what your personal life is like and how it is affected by your symptoms. You can then say, I should not and do not deserve this pain, and I will be needing something that will help me live a better quality of life as I cannot go on like this much longer. Let the doctor know how discouraging it is and depressing and how your outlook has changed for the worse and how you are loosing hope if that is how you feel. Usually these are all normal parts of having pain. For me it is also so distracting that I am very tired out form focusing on the pain. It begins to rule my life and I should run my life. What ever works best for you April. I’m only here to offer what has helped me in the past and want to see you have help as we all deserve better quality of life than with so much pain. Take care, Let me know the outcome, From: April Sent: Sunday, March 25, 2012 8:20 PM To: Stillsdisease Subject: need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! April Sent from my Verizon Wireless Phone need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! April Sent from my Verizon Wireless Phone need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! April Sent from my Verizon Wireless Phone need advice I would like advice from anyone and everyone. I am goin to the doctor Thursday, my primary. I want to ask for pain medicine, but I am not sure how to ask exactly. I don't have a constant pain med I take daily but I definately need something. I have a plethera of conditions that cause a great deal of pain and OTC options have run their coarse. On a rare occassion asprin still helps a little for some headaches. Stills causes joint pain, but that is much better since I have been on the MTX injections instead of the pills. I also take Kineret. I also have nerve pain from a pinched nerve in my hip. I have migraines. I have fybro. I have something wrong with my neck, upper spine and lumbar spine. There is also something wrong with my left hip that I think is different from the pinched nerve. I plan on bringing all these things up with my doctor and telling him he MUST address these issues AND my pain. I do see a nuerologist for the migraines, and he is just starting to delve into the nerve issues. But I am just not sure how to address the pain med issue. He gave me lortab acouple weeks ago when my back gave out. So bad I could not walk, but it was just to treat the " acute " symptoms. I can suck it up and deal with the pain better than just about anybody I know, but it is more than I can bare anymore. I do not want something that makes me loopy. I still want to work. I need to work, and I feel like I can...if I can keep my pain under control. I don't want something that is addictive. My kidneys are not filtering properly. That has been showing up on my bloodwork recently, so that has to be taken into account, too. I plan to ask my RD about that on my next visit as I don't know how bad theyn are, just that they aren't working right. My primary doctor said due to the kidneys I should probably stop taking my mobic. He was concerned about that affecting my arthritis symptoms, though. I just stopped to see what happened and did not notice any difference at all after a week and a half, so I don't really see any point in taking the Mobic. April PS I'm the one with the weird messed up emails, so my respones to the group will be from my mailto:raincoin%40sktc.net address...sorry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 I have been going through some tough times with my doctor. The first one hoped me for about 7 years and then when all my symptoms came back he tried one new medication and then just simply gave up. His exact words were " stay on Actemra, because you are out of options " . This was after my second allergic reaction to Actemra. So I changed Doctors and as I went to pick up my medical records from his office, he asked me why I was leaving and told me that " there were other options " and that it's perfectly okay to get a second opinion but to come back and he will do what my new doctor says. Too little too late! I am now going through the same thing with my new doctor. Last week he told me that how I feel now is " as good as I am gonna get " that " this is how I will stay " and that " there is nothing else he can do " ! Are you kidding me? It just seems that they are all willing to help at the beginning but once they realize that it is a much harder case than they expected they seem to back away. What happened to doctors who care about the patient? I think people are going into that profession for the wrong reasons these days! It is so frustrating. Thanks for listening Love, Angie Sent from my iPhone > ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! > > April > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 I have been going through some tough times with my doctor. The first one hoped me for about 7 years and then when all my symptoms came back he tried one new medication and then just simply gave up. His exact words were " stay on Actemra, because you are out of options " . This was after my second allergic reaction to Actemra. So I changed Doctors and as I went to pick up my medical records from his office, he asked me why I was leaving and told me that " there were other options " and that it's perfectly okay to get a second opinion but to come back and he will do what my new doctor says. Too little too late! I am now going through the same thing with my new doctor. Last week he told me that how I feel now is " as good as I am gonna get " that " this is how I will stay " and that " there is nothing else he can do " ! Are you kidding me? It just seems that they are all willing to help at the beginning but once they realize that it is a much harder case than they expected they seem to back away. What happened to doctors who care about the patient? I think people are going into that profession for the wrong reasons these days! It is so frustrating. Thanks for listening Love, Angie Sent from my iPhone > ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! > > April > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 I have been going through some tough times with my doctor. The first one hoped me for about 7 years and then when all my symptoms came back he tried one new medication and then just simply gave up. His exact words were " stay on Actemra, because you are out of options " . This was after my second allergic reaction to Actemra. So I changed Doctors and as I went to pick up my medical records from his office, he asked me why I was leaving and told me that " there were other options " and that it's perfectly okay to get a second opinion but to come back and he will do what my new doctor says. Too little too late! I am now going through the same thing with my new doctor. Last week he told me that how I feel now is " as good as I am gonna get " that " this is how I will stay " and that " there is nothing else he can do " ! Are you kidding me? It just seems that they are all willing to help at the beginning but once they realize that it is a much harder case than they expected they seem to back away. What happened to doctors who care about the patient? I think people are going into that profession for the wrong reasons these days! It is so frustrating. Thanks for listening Love, Angie Sent from my iPhone > ! I LOVE the idea of writing things down with the feeling and letting the doctor read it. THEN having the discussion. I may try this with my RD. I am confident he is monitoring my illness, but I don't feel like he communicates how I am really doing and where it truely is TO ME. I think he is use to patients " worrying " about their illnesses. I don't see anything to worry about, I just want, and need, to know. Thanks for the idea! > > April > > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 I wish I had something to contribute, but I just don't. I wish you the best of luck, though! I know you've been looking for those records for a long time. Sorry I can't be of help. April Sent from my Verizon Wireless Droid Need advice Howdy, I've been in contact with a man I served with (and was good friends with) in Basic Training who is now a retired Colonel/Military Adviser. He has a connection high up in the V.A. who is attempting to locate my military medical records. The only additional information this Officer has asked for are what are the possible triggers (viruses/vaccinations/immunizations) for Stills. I know when I first got nailed down in Ft. Benning, Ga the symptoms were virtually identical to what hit me when I was 32, except they never left the 2nd time around. When I became violently ill in January 2004 they ran countless tests, and I came back positive on many viruses I had never had. Off of the top of me head there was the Epstein Barr, Rubella?, and numerous others. I can use some assistance on this, I do remember years ago there was a lot of on list discussion about these types of things and hope someones' memory is working better than mine at the moment! Thanks, Kirk. -- Everything in life sucks except things that should! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 I wish I had something to contribute, but I just don't. I wish you the best of luck, though! I know you've been looking for those records for a long time. Sorry I can't be of help. April Sent from my Verizon Wireless Droid Need advice Howdy, I've been in contact with a man I served with (and was good friends with) in Basic Training who is now a retired Colonel/Military Adviser. He has a connection high up in the V.A. who is attempting to locate my military medical records. The only additional information this Officer has asked for are what are the possible triggers (viruses/vaccinations/immunizations) for Stills. I know when I first got nailed down in Ft. Benning, Ga the symptoms were virtually identical to what hit me when I was 32, except they never left the 2nd time around. When I became violently ill in January 2004 they ran countless tests, and I came back positive on many viruses I had never had. Off of the top of me head there was the Epstein Barr, Rubella?, and numerous others. I can use some assistance on this, I do remember years ago there was a lot of on list discussion about these types of things and hope someones' memory is working better than mine at the moment! Thanks, Kirk. -- Everything in life sucks except things that should! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 I wish I had something to contribute, but I just don't. I wish you the best of luck, though! I know you've been looking for those records for a long time. Sorry I can't be of help. April Sent from my Verizon Wireless Droid Need advice Howdy, I've been in contact with a man I served with (and was good friends with) in Basic Training who is now a retired Colonel/Military Adviser. He has a connection high up in the V.A. who is attempting to locate my military medical records. The only additional information this Officer has asked for are what are the possible triggers (viruses/vaccinations/immunizations) for Stills. I know when I first got nailed down in Ft. Benning, Ga the symptoms were virtually identical to what hit me when I was 32, except they never left the 2nd time around. When I became violently ill in January 2004 they ran countless tests, and I came back positive on many viruses I had never had. Off of the top of me head there was the Epstein Barr, Rubella?, and numerous others. I can use some assistance on this, I do remember years ago there was a lot of on list discussion about these types of things and hope someones' memory is working better than mine at the moment! Thanks, Kirk. -- Everything in life sucks except things that should! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 It will be 10 years in a few short months! I've been told they were burned, lost, destroyed and than my RD, who is on call for the V.A. in Lebanon,Pa finds my name in their damn computer, but no one can access it! Kirk/ > ** > > > I wish I had something to contribute, but I just don't. I wish you the > best > of luck, though! I know you've been looking for those records for a long > time. Sorry I can't be of help. > > April > > Sent from my Verizon Wireless Droid > > > Need advice > > Howdy, I've been in contact with a man I served with (and was good > friends with) in Basic Training who is now a retired > Colonel/Military Adviser. He has a connection high up in the V.A. who > is attempting to locate my military medical records. The only additional > information this Officer has asked for are what are the possible triggers > (viruses/vaccinations/immunizations) for Stills. I know when I first got > nailed down in Ft. Benning, Ga the symptoms were virtually identical to > what hit me when I was 32, except they never left the 2nd time around. > When I became violently ill in January 2004 they ran countless tests, > and I came back positive on many viruses I had never had. Off of the top of > me head there was the Epstein Barr, Rubella?, and numerous others. > I can use some assistance on this, I do remember years ago there was a > lot of on list discussion about these types of things and hope someones' > memory is working better than mine at the moment! > Thanks, Kirk. > > -- > Everything in life sucks except things that should! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 It will be 10 years in a few short months! I've been told they were burned, lost, destroyed and than my RD, who is on call for the V.A. in Lebanon,Pa finds my name in their damn computer, but no one can access it! Kirk/ > ** > > > I wish I had something to contribute, but I just don't. I wish you the > best > of luck, though! I know you've been looking for those records for a long > time. Sorry I can't be of help. > > April > > Sent from my Verizon Wireless Droid > > > Need advice > > Howdy, I've been in contact with a man I served with (and was good > friends with) in Basic Training who is now a retired > Colonel/Military Adviser. He has a connection high up in the V.A. who > is attempting to locate my military medical records. The only additional > information this Officer has asked for are what are the possible triggers > (viruses/vaccinations/immunizations) for Stills. I know when I first got > nailed down in Ft. Benning, Ga the symptoms were virtually identical to > what hit me when I was 32, except they never left the 2nd time around. > When I became violently ill in January 2004 they ran countless tests, > and I came back positive on many viruses I had never had. Off of the top of > me head there was the Epstein Barr, Rubella?, and numerous others. > I can use some assistance on this, I do remember years ago there was a > lot of on list discussion about these types of things and hope someones' > memory is working better than mine at the moment! > Thanks, Kirk. > > -- > Everything in life sucks except things that should! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 It will be 10 years in a few short months! I've been told they were burned, lost, destroyed and than my RD, who is on call for the V.A. in Lebanon,Pa finds my name in their damn computer, but no one can access it! Kirk/ > ** > > > I wish I had something to contribute, but I just don't. I wish you the > best > of luck, though! I know you've been looking for those records for a long > time. Sorry I can't be of help. > > April > > Sent from my Verizon Wireless Droid > > > Need advice > > Howdy, I've been in contact with a man I served with (and was good > friends with) in Basic Training who is now a retired > Colonel/Military Adviser. He has a connection high up in the V.A. who > is attempting to locate my military medical records. The only additional > information this Officer has asked for are what are the possible triggers > (viruses/vaccinations/immunizations) for Stills. I know when I first got > nailed down in Ft. Benning, Ga the symptoms were virtually identical to > what hit me when I was 32, except they never left the 2nd time around. > When I became violently ill in January 2004 they ran countless tests, > and I came back positive on many viruses I had never had. Off of the top of > me head there was the Epstein Barr, Rubella?, and numerous others. > I can use some assistance on this, I do remember years ago there was a > lot of on list discussion about these types of things and hope someones' > memory is working better than mine at the moment! > Thanks, Kirk. > > -- > Everything in life sucks except things that should! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 Hi Kirk: I believe another one of them was Lyme Disease? And also it was mis-diagnosed as Lupus and a few others? I believe that is what you want isn't it?  Bob Panama City, FL 32404 Please visit the International Stills Disease Foundation Inc. Web Site at www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel Ave., Panama City, FL 32404. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 They thought I initially had LYME but it kept coming back negative, and that test has been repeated numerous times. I thought I remembered there being a discussion years ago where certain viruses could trigger an auto-immune type reaction such as Stills. I know it was on list, but that was most likely at least 7 or 8 years ago. Kirk. > ** > > > Hi Kirk: > I believe another one of them was Lyme Disease? And also it > was mis-diagnosed as Lupus and a few others? I believe that is what you > want > isn't it? > > > > > > >  > Bob > Panama City, FL 32404 > Please visit the International Stills Disease Foundation Inc. Web Site at > www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all > volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel > Ave., Panama City, FL 32404. Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 They thought I initially had LYME but it kept coming back negative, and that test has been repeated numerous times. I thought I remembered there being a discussion years ago where certain viruses could trigger an auto-immune type reaction such as Stills. I know it was on list, but that was most likely at least 7 or 8 years ago. Kirk. > ** > > > Hi Kirk: > I believe another one of them was Lyme Disease? And also it > was mis-diagnosed as Lupus and a few others? I believe that is what you > want > isn't it? > > > > > > >  > Bob > Panama City, FL 32404 > Please visit the International Stills Disease Foundation Inc. Web Site at > www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all > volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel > Ave., Panama City, FL 32404. Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2012 Report Share Posted August 20, 2012 They thought I initially had LYME but it kept coming back negative, and that test has been repeated numerous times. I thought I remembered there being a discussion years ago where certain viruses could trigger an auto-immune type reaction such as Stills. I know it was on list, but that was most likely at least 7 or 8 years ago. Kirk. > ** > > > Hi Kirk: > I believe another one of them was Lyme Disease? And also it > was mis-diagnosed as Lupus and a few others? I believe that is what you > want > isn't it? > > > > > > >  > Bob > Panama City, FL 32404 > Please visit the International Stills Disease Foundation Inc. Web Site at > www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all > volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel > Ave., Panama City, FL 32404. Thanks! > > > Quote Link to comment Share on other sites More sharing options...
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