Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Hello Dawn A. So sorry to hear about all the problems you are having with the results( or lack of) of your biopsy. It is so frustrating to say the least. I am not sure if all three of the reports would come in at the same time. But I think the biopsy tissue is frozen when they do the Electron Microscopy. Where are you live Dawn? I am also sorry to hear that your children are also affected by this horrible disease. It is probably a good idea to get on a waiting list for another Mito doctor. I am not sure if Dr. Gropman is taking adults or not, but if she is I am sure we can find another doctor to help you. I have one more question: The Doctor who wrote up the prescription for you to have your biopsy done, who is it? And can she/he call the lab for the results of the biopsy? Or did she/he do the biopsy? and this is their office that is giving you the hard time? Okay, it was more than ONE question....LOL Take Care. Hang in there, things have to get better.!! Hugs, Ann-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 --- Hi Ann-Marie! I live in Wisconsin between Milwaukee and Chicago. I am willing to travel any where to get another Drs opinion. I would like someone who is really an expert. That is hard to come by. THe Dr who ordered the biopsy is at the same facility where it was performed. She is the one who saw the abnormal mitochodria under a microscope. She specializes in Mito. I do not have much trust in her ... she said I had a conversion disorder and her mind was closed to that. It took other Drs and a PT to prove her wrong. Sometimes she says things that contridicte what I have read or heard on this forum. I often feel very confused after I leave the clinic having more questions than I had when I came in. I am trying to trust her. But we are all human. I gave Dr Gropman's office a call and left a message. I really liked how she answered my questions when I was on the chat. It would be wonderful to see her but she probably is full. Any recommendations on where else I could go. Who else is their to see?? Thanks Dawn A In , " Ann-Marie " wrote: > Hello Dawn A. > > So sorry to hear about all the problems you are having with the results( or lack of) of your biopsy. It is so frustrating to say the least. I am not sure if all three of the reports would come in at the same time. But I think the biopsy tissue is frozen when they do the Electron Microscopy. > > Where are you live Dawn? I am also sorry to hear that your children are also affected by this horrible disease. It is probably a good idea to get on a waiting list for another Mito doctor. I am not sure if Dr. Gropman is taking adults or not, but if she is I am sure we can find another doctor to help you. > > I have one more question: The Doctor who wrote up the prescription for you to have your biopsy done, who is it? And can she/he call the lab for the results of the biopsy? Or did she/he do the biopsy? and this is their office that is giving you the hard time? Okay, it was more than ONE question....LOL > > Take Care. Hang in there, things have to get better.!! > Hugs, > Ann-Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 We went to Georgia from New Jersey to see Dr. Shoffner. In retrospect, I wish we had done it sooner. We decided not to go local (NYC) because at the time C-P wasn't doing fresh muscle biopsies. Scheduling the fresh muscle biopsy is one thing, but waiting for the results can be frustrating. One thing I liked about Dr. Shoffner is that he didn't rule out other neuromuscular diseases, they checked for many other conditions too... Take care, RH > > Hello Dawn A. > > > > So sorry to hear about all the problems you are having with the > results( or lack of) of your biopsy. It is so frustrating to say the > least. I am not sure if all three of the reports would come in at > the same time. But I think the biopsy tissue is frozen when they do > the Electron Microscopy. > > > > Where are you live Dawn? I am also sorry to hear that your > children are also affected by this horrible disease. It is probably > a good idea to get on a waiting list for another Mito doctor. I am > not sure if Dr. Gropman is taking adults or not, but if she is I am > sure we can find another doctor to help you. > > > > I have one more question: The Doctor who wrote up the prescription > for you to have your biopsy done, who is it? And can she/he call the > lab for the results of the biopsy? Or did she/he do the biopsy? and > this is their office that is giving you the hard time? Okay, it was > more than ONE question....LOL > > > > Take Care. Hang in there, things have to get better.!! > > Hugs, > > Ann-Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 --- That was the right way to go. Good for you. I have read COX disorders are more likely to show up on fresh biopsies. I would like to have my information sent to him. Just to see what he thinks. I I am going to wait until after my appointment. Dawn a In , " ohgminion " wrote: > We went to Georgia from New Jersey to see Dr. Shoffner. In > retrospect, I wish we had done it sooner. We decided not to go local > (NYC) because at the time C-P wasn't doing fresh muscle biopsies. > > Scheduling the fresh muscle biopsy is one thing, but waiting for the > results can be frustrating. One thing I liked about Dr. Shoffner is > that he didn't rule out other neuromuscular diseases, they checked > for many other conditions too... > > Take care, > RH > > > > > > Hello Dawn A. > > > > > > So sorry to hear about all the problems you are having with the > > results( or lack of) of your biopsy. It is so frustrating to say > the > > least. I am not sure if all three of the reports would come in at > > the same time. But I think the biopsy tissue is frozen when they do > > the Electron Microscopy. > > > > > > Where are you live Dawn? I am also sorry to hear that your > > children are also affected by this horrible disease. It is probably > > a good idea to get on a waiting list for another Mito doctor. I am > > not sure if Dr. Gropman is taking adults or not, but if she is I am > > sure we can find another doctor to help you. > > > > > > I have one more question: The Doctor who wrote up the > prescription > > for you to have your biopsy done, who is it? And can she/he call > the > > lab for the results of the biopsy? Or did she/he do the biopsy? and > > this is their office that is giving you the hard time? Okay, it was > > more than ONE question....LOL > > > > > > Take Care. Hang in there, things have to get better.!! > > > Hugs, > > > Ann-Marie > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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