Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Hey, ! Gooooo girl! That sounds very much like my last visit to my Doctor! I am still looking for an Immunologist but have not found one yet.....I am not 47, I am already 64, but I STILL have lots I want to do in this old world and am not ready to lie on the couch and wait my time to go! Hang in there, hon.........there are many in the same boat with youl Hugs, Darlene > Hey guys, how is everyone? Glad to see everyone chatting along > peacefully, > sharing their lives with one another. That's what makes this group so > wonderful, in my opinion. We can share each others victories and each > others down falls. So, that being said..lol.. I've got some updating to > do. > > I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for > me in the past, I had to beg him for Methotrexate, Then when it quite > working I begged him for Imuran. Well guess what, I needing something > else, > because either my system has gotten use to the Imuran, or for some unknown > reason, its not working anymore, and I have been in tears with my feet and > hands throbbing and aching. especially my toes. > > This was my first visit with him in a long time he had been letting me see > his Nurse Practioner, which was hunkie dorie with me, because she was at > least sympathetic and did at least seem interested in me and the disease. > So, I really liked her. She always tried to help me... But she left and I > had to see the mean bushy eyed brow man himself. He asked me what my > symptoms where, and before I could tell him, he informed me that I would > always have symptoms, that I would never get any better, and that there > was > NO CURE " for sarcoidosis. I was stunned for a moment, when I said, but Dr > bushy eye browed man, there are new drugs that are working well with some > of > my friend on the Neurosarcoidosis list. He proceed to ask me what they > were > and I said well Remicaide for one. He started screaming, that he had > tried > it on 2 patients and it " DID NOT WORK " As you see, I am very calm about > this.. LOL...I said what about cyclosporin, " It will burn your kidney's > up " > he screamed out once more. " I will not do any other med changes for you " > Your disease will never go away " and you will have to live like this " . > and > I will see you in 3 months..as he walked out the door... > > See, I'm still calm...I waddled over to the receptionist desk, and told > her > he wanted to see me in three months, and while I was there I wanted a > release form for my medical records to be sent " TO ME " .. A stund face she > looked at me and said " WHY " I laughed and said, because I'm 47 years old > and I'm not ready to just lay down and die. I will go for a second > opinion > somewhere, where yet I don't know. But, I will find someone " . She > stumbled > around her office space there and finally found the form.. I filled it out > and have every intention of seeking help from someone else. > > I came home still calm, but a little more flustered, and I typed in my > Nurse > Practicioners name and low and behold, I found her. she is still close by, > though pregnant, and I emailed her doctor that she works for and they as a > team have agreed to see me and work with me. Yes, I may have to see Dr > Baughman at least once for a medical plan. And the microbiologist called > me to tell me they are doing a new study, that just involves a blood draw > for mycrobateria.. and asked if I wanted to participate... Well, YEAH... > anything at this moment. Are you guys totally bored yet. lol... > > This is just a short story of my Crazy Assed Dr over the last few weeks. > I > was a nurse and I know determination, and he is as determined NOT to help > me > as I am determined that Somebody Will.. > > Guys, the moral of my story is. Don't give up.. Don't waste time like I > have dealing with doctors that don't give a damn if you live or die. If > they are not interested in you or your case. GET OUT OF THERE!!! Fast, > Run, > Don't even look Back! We are talking serious neglect and malpractice, if > someone that agrees to see you and don't and won't treat you, then move > on, > don't even argue with them... I think Aisha said, she went through 30 > doctors before she found the team of doctors that she determined would be > on > her team. > > Now that your all pumped up... LOL .. and bored to tears.. Get the help > you > deserve. You have to learn to be a fighter, fight for the right to live > and > live with a good quality of life. or at least a reasonable one. > > Hugs to you all, > > Thanks to all that made it through my story, and to those of you that > didn't > Oh well.. maybe next time, I go on a rampage it won't be so long. > > Love you all, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Hey, ! Gooooo girl! That sounds very much like my last visit to my Doctor! I am still looking for an Immunologist but have not found one yet.....I am not 47, I am already 64, but I STILL have lots I want to do in this old world and am not ready to lie on the couch and wait my time to go! Hang in there, hon.........there are many in the same boat with youl Hugs, Darlene > Hey guys, how is everyone? Glad to see everyone chatting along > peacefully, > sharing their lives with one another. That's what makes this group so > wonderful, in my opinion. We can share each others victories and each > others down falls. So, that being said..lol.. I've got some updating to > do. > > I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for > me in the past, I had to beg him for Methotrexate, Then when it quite > working I begged him for Imuran. Well guess what, I needing something > else, > because either my system has gotten use to the Imuran, or for some unknown > reason, its not working anymore, and I have been in tears with my feet and > hands throbbing and aching. especially my toes. > > This was my first visit with him in a long time he had been letting me see > his Nurse Practioner, which was hunkie dorie with me, because she was at > least sympathetic and did at least seem interested in me and the disease. > So, I really liked her. She always tried to help me... But she left and I > had to see the mean bushy eyed brow man himself. He asked me what my > symptoms where, and before I could tell him, he informed me that I would > always have symptoms, that I would never get any better, and that there > was > NO CURE " for sarcoidosis. I was stunned for a moment, when I said, but Dr > bushy eye browed man, there are new drugs that are working well with some > of > my friend on the Neurosarcoidosis list. He proceed to ask me what they > were > and I said well Remicaide for one. He started screaming, that he had > tried > it on 2 patients and it " DID NOT WORK " As you see, I am very calm about > this.. LOL...I said what about cyclosporin, " It will burn your kidney's > up " > he screamed out once more. " I will not do any other med changes for you " > Your disease will never go away " and you will have to live like this " . > and > I will see you in 3 months..as he walked out the door... > > See, I'm still calm...I waddled over to the receptionist desk, and told > her > he wanted to see me in three months, and while I was there I wanted a > release form for my medical records to be sent " TO ME " .. A stund face she > looked at me and said " WHY " I laughed and said, because I'm 47 years old > and I'm not ready to just lay down and die. I will go for a second > opinion > somewhere, where yet I don't know. But, I will find someone " . She > stumbled > around her office space there and finally found the form.. I filled it out > and have every intention of seeking help from someone else. > > I came home still calm, but a little more flustered, and I typed in my > Nurse > Practicioners name and low and behold, I found her. she is still close by, > though pregnant, and I emailed her doctor that she works for and they as a > team have agreed to see me and work with me. Yes, I may have to see Dr > Baughman at least once for a medical plan. And the microbiologist called > me to tell me they are doing a new study, that just involves a blood draw > for mycrobateria.. and asked if I wanted to participate... Well, YEAH... > anything at this moment. Are you guys totally bored yet. lol... > > This is just a short story of my Crazy Assed Dr over the last few weeks. > I > was a nurse and I know determination, and he is as determined NOT to help > me > as I am determined that Somebody Will.. > > Guys, the moral of my story is. Don't give up.. Don't waste time like I > have dealing with doctors that don't give a damn if you live or die. If > they are not interested in you or your case. GET OUT OF THERE!!! Fast, > Run, > Don't even look Back! We are talking serious neglect and malpractice, if > someone that agrees to see you and don't and won't treat you, then move > on, > don't even argue with them... I think Aisha said, she went through 30 > doctors before she found the team of doctors that she determined would be > on > her team. > > Now that your all pumped up... LOL .. and bored to tears.. Get the help > you > deserve. You have to learn to be a fighter, fight for the right to live > and > live with a good quality of life. or at least a reasonable one. > > Hugs to you all, > > Thanks to all that made it through my story, and to those of you that > didn't > Oh well.. maybe next time, I go on a rampage it won't be so long. > > Love you all, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 , you may need to take the Imuran and Methotrexate together. One may not work by itself. I am also on Plaquenil with the Metho and Imuran. Break outs have really slowed down. Sharon Helloooo there Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was "NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were, and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" "Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 4, 2004 Report Share Posted June 4, 2004 , you may need to take the Imuran and Methotrexate together. One may not work by itself. I am also on Plaquenil with the Metho and Imuran. Break outs have really slowed down. Sharon Helloooo there Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was "NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were, and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" "Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 4, 2004 Report Share Posted June 4, 2004 , I know what you mean about docs the one i'm dealing with still cause I don't think there are any good ones here in Tn even though I haven't never made it down to see Dr Soskel I guess cause i'm affraid of another disappointment.........but mine keeps telling me I have to live with it or i'll run a couple blood test and see and if it doesn't show anything I don't know what to tell you.......What the hell kind of doctor is that? Like I think my spleen or something over there is involved but he won't investigate says there is no way to pin point it he says its probably adhesions or something........gimme a break............ I can literally feel my health going down hill but I have all the cards stacked against me I mean it seems my only option would be to go and see Dr Soskel and maybe now that I have met someone maybe he will go with me cause he seems interested in me getting good medical care. But my pcp can kiss my americal A** I have been in a flare for a while and he won't do anything and I told him hje can forget giving me pred again. And my neuro I missed his appointment cause the last one I had with him he had decided that it would be best that he won't operate on me cause he said the fusion won't take because i'm a smoker and my bones would be too brittle, i've never heard of such a thing so why should I go back and hear the same thing over and over, which I have been going round and round with him and having this disc removed they just did another MRI and it showed the same just more spinal stenosis. Phewwww I guess you are tired of hearing from me now so i'll shut up, so take care sweetie and keep us posted. Faith makes all things possible,Hope makes all things bright,Love makes all things easy............. Jan....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Nope Jan, This is exactly the reason I posted what I did, I know there are more of us out there than just in TN that's having this kind of problem, I just need to think about what to do about it.. Who to call, Who to write, Who to give a good TN cussing too. LOL, J/K but seriously, if they keep this up I will be driven to madness, and I'm not a pretty site mad.. I promise, my hair is brown but I have a Red tint to it and it gets "redder" the madder I get. Thanks for your post. Thanks to Debbie and Darlene for their post as well, if any of you are having this kind of problem let us hear about it.. surely there is something we can do if we all put our Neurological damaged brains together... Hugs, -- Re: Helloooo there , I know what you mean about docs the one i'm dealing with still cause I don't think there are any good ones here in Tn even though I haven't never made it down to see Dr Soskel I guess cause i'm affraid of another disappointment.........but mine keeps telling me I have to live with it or i'll run a couple blood test and see and if it doesn't show anything I don't know what to tell you.......What the hell kind of doctor is that? Like I think my spleen or something over there is involved but he won't investigate says there is no way to pin point it he says its probably adhesions or something........gimme a break............ I can literally feel my health going down hill but I have all the cards stacked against me I mean it seems my only option would be to go and see Dr Soskel and maybe now that I have met someone maybe he will go with me cause he seems interested in me getting good medical care. But my pcp can kiss my americal A** I have been in a flare for a while and he won't do anything and I told him hje can forget giving me pred again. And my neuro I missed his appointment cause the last one I had with him he had decided that it would be best that he won't operate on me cause he said the fusion won't take because i'm a smoker and my bones would be too brittle, i've never heard of such a thing so why should I go back and hear the same thing over and over, which I have been going round and round with him and having this disc removed they just did another MRI and it showed the same just more spinal stenosis. Phewwww I guess you are tired of hearing from me now so i'll shut up, so take care sweetie and keep us posted. Faith makes all things possible,Hope makes all things bright,Love makes all things easy............. Jan.......~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 4, 2004 Report Share Posted June 4, 2004 Thanks Sharon, I agree the combination may work, but I've already made plans to see a new neurologist, and thinking very seriously about seeing Dr Baughman, at least once for a consultation. My old farty neuro says he "Will NOT, add or change ANY Meds" which is why Mr Bushy-Eyebrowed man is a goner! Hugs and thanks, PS. Did I read somewhere you have a new love interest? Geeze, I want one, too.. LOL -- Re: Helloooo there , you may need to take the Imuran and Methotrexate together. One may not work by itself. I am also on Plaquenil with the Metho and Imuran. Break outs have really slowed down. Sharon Helloooo there Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was "NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were, and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" "Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 5, 2004 Report Share Posted June 5, 2004 , You handled that situation perfectly. What a jerk. Wouldn't be the first time a doctor took it out on a patient cuz they didn't know what to do with them and didn't want to stick their neck out to try something new. I wish you the best on your search for a new doctor. I've put that on hold for much the same reasons....the hassle of it all. I have had so much trouble with my parotid glands bu they've done an mri and all that crud and just say it's probably the sarc acting up but do nothing for it. I've had so much pain there every since last fall. When it rains for a few days in a row...I am about ready to scream cuz of the pain so I just swallow more pain pills. What's wrong with this picture?....So I can sympathize. My prayers are with you to find a doc with some answers. hugs S. wrote: Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was "NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were, and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" "Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 5, 2004 Report Share Posted June 5, 2004 LOL, this seemed to fit the theme better, as I left the Doctor's office. I felt as if I was getting out of there to save my life. I'm sorry your having so much trouble, and NO doctor has of yet been willing to help you. I think, that this is the most unforgivable thing, I've ever heard of. I worked for 25 years, and yes there were cases that were untreatable, but they were usually terminal cancer patients, or cardiomyopathy patients, and now they can even give them a transplant, I think its up to us to demand, proper healthcare, I have already written to Vanderbilt as a complaint, and I'm considering writing to our legislators, and even the President (not that he would do anything) but our only hope of decent health care sweetie is to fight for it. As I've already said, I'm not ready just to lay down and die, there are things that I still need to see. Places I still want to go. People I still want to meet. Movies I haven't seen yet and so on. Don't get discouraged, . This is the way they win. Just keep moving on to the next doctor, and to the next and to the next. Hugs, -- Re: Helloooo there , You handled that situation perfectly. What a jerk. Wouldn't be the first time a doctor took it out on a patient cuz they didn't know what to do with them and didn't want to stick their neck out to try something new. I wish you the best on your search for a new doctor. I've put that on hold for much the same reasons....the hassle of it all. I have had so much trouble with my parotid glands bu they've done an mri and all that crud and just say it's probably the sarc acting up but do nothing for it. I've had so much pain there every since last fall. When it rains for a few days in a row...I am about ready to scream cuz of the pain so I just swallow more pain pills. What's wrong with this picture?....So I can sympathize. My prayers are with you to find a doc with some answers. hugs S. wrote: Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was "NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were, and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" "Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 5, 2004 Report Share Posted June 5, 2004 hi ! yA KNOW... this email truly gave me more "spark" and tears to my eyes knowing others are going through the same thing.. thats whats great about this group. i'd rather read a long email with details so i can get a better picture... this has definetely given me the strength to move on and NOT GIVE UP..... I thank you all for sharing these personal stories, no matter how minor some of them may be, every little bit helps... Your all always in my thoughts and prayers... and though they always say there is no cure for sacoidosis... there are many ways to treat it... thanks to all of you for helping each other.. as I'm truly thankful that I joined this group (less than a month ago) God bless ya'll ! have a great weekend ! joleen j:) Reply-To: Neurosarcoidosis To: <Neurosarcoidosis > Subject: Re: Helloooo there Date: Sat, 5 Jun 2004 09:07:23 -0500 (Central Standard Time) LOL, this seemed to fit the theme better, as I left the Doctor's office I felt as if I was getting out of there to save my life. I'm sorry your having so much trouble, and NO doctor has of yet been willing to help you. I think, that this is the most unforgivable thing, I've ever heard of. I worked for 25 years, and yes there were cases that were untreatable, but they were usually terminal cancer patients, or cardiomyopathy patients, and now they can even give them a transplant, I think its up to us to demand, proper healthcare, I have already written to Vanderbilt as a complaint, and I'm considering writing to our legislators, and even the President (not that he would do anything) but our only hope of decent health care sweetie is to fight for it. As I've already said, I'm not ready just to lay down and die, there are things that I still need to see. Places I still want to go. People I still want to meet. Movies I haven't seen yet and so on. Don't get discouraged, . This is the way they win. Just keep moving on to the next doctor, and to the next and to the next. Hugs, -- Re: Helloooo there , You handled that situation perfectly. What a jerk. Wouldn't be the first time a doctor took it out on a patient cuz they didn't know what to do with them and didn't want to stick their neck out to try something new I wish you the best on your search for a new doctor. I've put that on hold for much the same reasons....the hassle of it all. I have had so much trouble with my parotid glands bu they've done an mri and all that crud and just say it's probably the sarc acting up but do nothing for it. I've had so much pain there every since last fall. When it rains for a few days in a row...I am about ready to scream cuz of the pain so I just swallow more pain pills. What's wrong with this picture?....So I can sympathize. My prayers are with you to find a doc with some answers. hugs S. wrote: Hey guys, how is everyone? Glad to see everyone chatting along peacefully, sharing their lives with one another. That's what makes this group so wonderful, in my opinion. We can share each others victories and each others down falls. So, that being said..lol.. I've got some updating to do. I saw my Immuno/Neurologist last week, and he hasn't done a whole lot for me in the past, I had to beg him for Methotrexate, Then when it quite working I begged him for Imuran. Well guess what, I needing something else, because either my system has gotten use to the Imuran, or for some unknown reason, its not working anymore, and I have been in tears with my feet and hands throbbing and aching. especially my toes. This was my first visit with him in a long time he had been letting me see his Nurse Practioner, which was hunkie dorie with me, because she was at least sympathetic and did at least seem interested in me and the disease. So, I really liked her. She always tried to help me... But she left and I had to see the mean bushy eyed brow man himself. He asked me what my symptoms where, and before I could tell him, he informed me that I would always have symptoms, that I would never get any better, and that there was NO CURE" for sarcoidosis. I was stunned for a moment, when I said, but Dr bushy eye browed man, there are new drugs that are working well with some of my friend on the Neurosarcoidosis list. He proceed to ask me what they were and I said well Remicaide for one. He started screaming, that he had tried it on 2 patients and it "DID NOT WORK" As you see, I am very calm about this.. LOL...I said what about cyclosporin, "It will burn your kidney's up" he screamed out once more. " I will not do any other med changes for you" Your disease will never go away" and you will have to live like this". and I will see you in 3 months..as he walked out the door... See, I'm still calm...I waddled over to the receptionist desk, and told her he wanted to see me in three months, and while I was there I wanted a release form for my medical records to be sent "TO ME".. A stund face she looked at me and said "WHY" I laughed and said, because I'm 47 years old and I'm not ready to just lay down and die. I will go for a second opinion somewhere, where yet I don't know. But, I will find someone". She stumbled around her office space there and finally found the form.. I filled it out and have every intention of seeking help from someone else. I came home still calm, but a little more flustered, and I typed in my Nurse Practicioners name and low and behold, I found her. she is still close by, though pregnant, and I emailed her doctor that she works for and they as a team have agreed to see me and work with me. Yes, I may have to see Dr Baughman at least once for a medical plan. And the microbiologist called me to tell me they are doing a new study, that just involves a blood draw for mycrobateria.. and asked if I wanted to participate... Well, YEAH... anything at this moment. Are you guys totally bored yet. lol... This is just a short story of my Crazy Assed Dr over the last few weeks. I was a nurse and I know determination, and he is as determined NOT to help me as I am determined that Somebody Will.. Guys, the moral of my story is. Don't give up.. Don't waste time like I have dealing with doctors that don't give a damn if you live or die. If they are not interested in you or your case. GET OUT OF THERE!!! Fast, Run, Don't even look Back! We are talking serious neglect and malpractice, if someone that agrees to see you and don't and won't treat you, then move on, don't even argue with them... I think Aisha said, she went through 30 doctors before she found the team of doctors that she determined would be on her team. Now that your all pumped up... LOL .. and bored to tears.. Get the help you deserve. You have to learn to be a fighter, fight for the right to live and live with a good quality of life. or at least a reasonable one. Hugs to you all, Thanks to all that made it through my story, and to those of you that didn't Oh well.. maybe next time, I go on a rampage it won't be so long. Love you all, ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members 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 June 6, 2004 Report Share Posted June 6, 2004 , You are brave and I admire you! I just want to pat you on the back for saying "Hell No" to that idiotic Doctor!! He's got issues! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 , You are brave and I admire you! I just want to pat you on the back for saying "Hell No" to that idiotic Doctor!! He's got issues! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 I guess you are tired of hearing from me now NO - we never tire of hearing from you!!! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 I guess you are tired of hearing from me now NO - we never tire of hearing from you!!! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 Thanks Jeri, that's what we've all got to do, and mean it, we are in a fight for our lives, and I don't mean to be dramatic, but I want not only to live but like everyone else I want what portion of my life back that I can get. There is such a thing as quality of life. And with the forming of our new health care system, its not considering either. I know you and Gregg would love to have even just a part of your lives back...One with out pain, of fatigue, or of just being sick. We do have rights, as I recall and I believe, that fair and accurate health care is one of our rights... just me blowing off... But as I've said I was a nurse for 25 years, and I never new this side of health care. Thank God I didn't for I would had quit and long ago before I got sick. Anyway, that being said, thanks for the pat on the back... I always can use one of those. Hugs, -- Re: Helloooo there , You are brave and I admire you! I just want to pat you on the back for saying "Hell No" to that idiotic Doctor!! He's got issues! Love, Jeri~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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 June 6, 2004 Report Share Posted June 6, 2004 Thanks Jeri, that's what we've all got to do, and mean it, we are in a fight for our lives, and I don't mean to be dramatic, but I want not only to live but like everyone else I want what portion of my life back that I can get. There is such a thing as quality of life. And with the forming of our new health care system, its not considering either. I know you and Gregg would love to have even just a part of your lives back...One with out pain, of fatigue, or of just being sick. We do have rights, as I recall and I believe, that fair and accurate health care is one of our rights... just me blowing off... But as I've said I was a nurse for 25 years, and I never new this side of health care. Thank God I didn't for I would had quit and long ago before I got sick. Anyway, that being said, thanks for the pat on the back... I always can use one of those. Hugs, -- Re: Helloooo there , You are brave and I admire you! I just want to pat you on the back for saying "Hell No" to that idiotic Doctor!! He's got issues! Love, Jeri~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage 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...
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