Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 I also have the same problem because the doc who diagnosed me didn't feel a biopsy was necessary. Hey, I never even heard of sarc then. So, I also went to Hopkins a number of years ago. The same limbo.... I saw Dr. Moeller there and he was terrific. He believes I have multi system sarc but, there in lies the dilemma, no real findings on some lab slide. It's a real pain. So my rheumo doesn't think this is sarc, even with a letter from hopkins. My neuro, same thing. I live in limbo. They all want me to go back to Hopkins and I said, why?? Nothing has changed,. Where are they going to biopsy. My eye?? No way.. Hang in there, pred sucks, had the same effect on me with the screaming stabbing pains in my muscles. But, it may help the other stuff and that's what you have to worry about. Take care of yourself!! Bonnie BDelicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 > > > > Hey Guys, > > > > I just wanted to let you know that while I did not get a confirmed dx, > > I did feel good about seeing Dr. and he will make some > > recommendations about what we need to do next. His best guess is NS, > > but without a biopsy of something I am still in limbo. I am going to > > end up back on prednisone - which I have a terrible time with - have > > myopathy and can't walk very well. I think emotionally, though, he > > made me stop thinking I was nuts. After my horrible experience at Duke > > and being told my illness was psychosomatic, I kept thinking in the > > back of my mind that maybe it was all me. He really made me feel > > better about the whole thing. > > > > I will know more about his recommendations in a couple of weeks when I > > meet with my neurologist but I just want to thank you guys for > > sticking with me. > > > > Love to All > > > > Terri G.Thank You > > <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYJJUS> > > > > > > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb098_Z\ SYYYYYYJJUS & utm_id=7926> > > > > > Terri, > I'm glad you feel better about things, and I will continue to pray that > you get some answers. Marl a > > -- > ??à?±? > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Bonnie, Thanks for your concern. I am not looking forward to the pred because I do get myeopathy in my thighs but I guess that is the lesser of the two evils. I wish we could find something to biopsy prior to starting the prednisone but I don't see that happening. I will be seeing my PCP this week and I want to show him a couple of things and we will see what he says. Thanks again. Terri G. > > Terri, > I know how you must feel and I'm glad you have some answers now. You are > not crazy!!! Yeah!!! Hopefully your experience this time with pred will be > okay. Take care> Bonnie B > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campo\ s-duffy/ > 2050827?NCID=aolcmp00300000002598) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Terri, I have worked for other doctors like that myself. They should have their licenses burned. Like we have the vapors, or something. What ever they really were. The problem is that autoimmune diseases strike women disproportionately more than men, so we get the label. But, as on this board, you can see how this illness strikes men just as hard, they have just as much pain and problems that we women do. However, I imagine when they go to a doctor, they are treated differently. The doctors I work for treat women with respect. My neuro doc actually does think this may be ns as opposed to ms, which he thought I might have. But doesn't see enough, if any, to feel comfortable diagnosing it without concrete evidence, such as pathology. I can understand that. Doesn't help me much, but right now, thank God, I'm doing okay. Shouldn't say that too loud, sarc monster will hear... Bonnie BDelicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Bonnie, I know that it will suck to be on the prednisone but I know that it has to happen. Dr. really doesn't want to start without a biopsy but what do you do? He is sending a letter to my neuro so I will know a little more when that comes about what they are going to do. It feels good to know that I am not alone in this (without a firm diagnosis) and I really appreciate you writing about it. I am sorry you are in the same situation though. I can live without the diagnosis because I know that it is not a psychiatric illness! You know in your heart that all of these things are happening to you but doctors have a tendency to think that you don't look sick so it must be in your head. I actually worked for a neurologist who thought all women should be on anti-depressants and all of our illnesses would be cured. What a dope. This guy has a medical degree and makes a lot of money but behind the patients back he is attibuting a lot of the symptoms to a woman being hysterical. Well, I hope you do well and I thank you for telling me about your situation. Thanks again. Terri G. > > I also have the same problem because the doc who diagnosed me didn't feel a > biopsy was necessary. Hey, I never even heard of sarc then. So, I also went to > Hopkins a number of years ago. The same limbo.... I saw Dr. Moeller there > and he was terrific. He believes I have multi system sarc but, there in lies > the dilemma, no real findings on some lab slide. It's a real pain. So my rheumo > doesn't think this is sarc, even with a letter from hopkins. My neuro, same > thing. I live in limbo. They all want me to go back to Hopkins and I said, > why?? Nothing has changed,. Where are they going to biopsy. My eye?? No way.. > Hang in there, pred sucks, had the same effect on me with the screaming > stabbing pains in my muscles. But, it may help the other stuff and that's what you > have to worry about. Take care of yourself!! Bonnie B > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campo\ s-duffy/ > 2050827?NCID=aolcmp00300000002598) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Well you know the saying what comes around goes around, Bonnie, I know that it will suck to be on the prednisone but I know that it has to happen. Dr. really doesn't want to start without a biopsy but what do you do? He is sending a letter to my neuro so I will know a little more when that comes about what they are going to do. It feels good to know that I am not alone in this (without a firm diagnosis) and I really appreciate you writing about it. I am sorry you are in the same situation though. I can live without the diagnosis because I know that it is not a psychiatric illness! You know in your heart that all of these things are happening to you but doctors have a tendency to think that you don't look sick so it must be in your head. I actually worked for a neurologist who thought all women should be on anti-depressants and all of our illnesses would be cured. What a dope. This guy has a medical degree and makes a lot of money but behind the patients back he is attibuting a lot of the symptoms to a woman being hysterical. Well, I hope you do well and I thank you for telling me about your situation. Thanks again. Terri G. > > I also have the same problem because the doc who diagnosed me didn't feel a > biopsy was necessary. Hey, I never even heard of sarc then. So, I also went to > Hopkins a number of years ago. The same limbo.... I saw Dr. Moeller there > and he was terrific. He believes I have multi system sarc but, there in lies > the dilemma, no real findings on some lab slide. It's a real pain. So my rheumo > doesn't think this is sarc, even with a letter from hopkins. My neuro, same > thing. I live in limbo. They all want me to go back to Hopkins and I said, > why?? Nothing has changed,. Where are they going to biopsy. My eye?? No way.. > Hang in there, pred sucks, had the same effect on me with the screaming > stabbing pains in my muscles. But, it may help the other stuff and that's what you > have to worry about. Take care of yourself!! Bonnie B > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campo\ s-duffy/ > 2050827?NCID=aolcmp00300000002598) > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Bonnie, I won't tell the sarc monster if you won't. I am glad you work with a group that does respect women. Unfortunately I have run into my fair share. They think that because I have done research and can speak their language, I must be faking. I know there are people that have somatoform but I just happen to be smart; not faking. Well, take care and I will check on everyone soon. Terri g > I have worked for other doctors like that myself. They should have their > licenses burned. But, as on this board, you can see how > this illness strikes men just as hard, they have just as much pain and > problems that we women do. However, I imagine when they go to a doctor, they are > treated differently. > The doctors I work for treat women with respect. My neuro doc actually does > think this may be ns as opposed to ms, which he thought I might have. But > doesn't see enough, if any, to feel comfortable diagnosing it without > concrete evidence, such as pathology. I can understand that. Doesn't help me much, > but right now, thank God, I'm doing okay. Shouldn't say that too loud, sarc > monster will hear... Bonnie B > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campo\ s-duffy/ > 2050827?NCID=aolcmp00300000002598) > Quote Link to comment Share on other sites More sharing options...
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