Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Hi Marjette, Well, if a muscle biopsy is something you are interested in.....I know Dr. Korson at New England Medical in Boston is an advocate of the procedure. He told me to let him know when I am ready and he will get me hooked up with Atlanta to have a biopsy done. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Hello, I am an adult patient of Dr. s in Boston, and wondered if anyone else posting is a patient of his? I have been diagnosed with mito for about 10 years but done a blood test, not an actual muscle biopsy. (My main symptoms are exteame fatigue and weakness, with faintness, adrenal problems and a large smorgasboard of other symptoms.) Dr. s does not have much to offer and feels that a muscles biopsy not needed and I have considered getting other opinions. Is there nothing else out there for us right now or should I search for another doctor? ( I know that we don't give each other " medical advice " but sure would appreciate some " opinons " or other experiences. Thanks! Marjette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Marjette If your current doctor isn't treating you with the mito cocktail, you might want to find another doc or ask him about taking it. laurie > > Reply-To: > Date: Thu, 22 Apr 2004 20:03:08 -0000 > To: > Subject: Dr. s > > Hello, I am an adult patient of Dr. s in Boston, and > wondered if anyone else posting is a patient of his? I have been > diagnosed with mito for about 10 years but done a blood test, not an > actual muscle biopsy. (My main symptoms are exteame fatigue and > weakness, with faintness, adrenal problems and a large smorgasboard > of other symptoms.) Dr. s does not have much to offer and feels > that a muscles biopsy not needed and I have considered getting other > opinions. Is there nothing else out there for us right now or > should I search for another doctor? ( I know that we don't give each > other " medical advice " but sure would appreciate some " opinons " or > other experiences. Thanks! Marjette > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Dr 's should be treating with the mito coctail. Trish used to see Dr 's I believe. Marjette.. is he at Mass General or Beth Israel? I do have to share that I did not have a good experience in Boston but now since Dr Korson started treating Mito patients, there was some hope in that area. I believe Dr Korson now has a hold on accepting new adult patients which is unfortunate but happens all the time because these exceptional physicians end up with a patient load too heavy to handle. I traveled from New Mexico to Cleveland to see Dr Cohen because I am on his patient roster and even the MDA doctor here (along with my PCP) is more comfortable with me being seen by him. Marjette - unfortunately the choice of good mito specialists are few and far between but I would definitely question Dr s as I am pretty sure he has treated Mito patients and as far as I know, he does at least recommend the Mito Cocktail. Good Luck! Alice Dr. s > > Hello, I am an adult patient of Dr. s in Boston, and > wondered if anyone else posting is a patient of his? I have been > diagnosed with mito for about 10 years but done a blood test, not an > actual muscle biopsy. (My main symptoms are exteame fatigue and > weakness, with faintness, adrenal problems and a large smorgasboard > of other symptoms.) Dr. s does not have much to offer and feels > that a muscles biopsy not needed and I have considered getting other > opinions. Is there nothing else out there for us right now or > should I search for another doctor? ( I know that we don't give each > other " medical advice " but sure would appreciate some " opinons " or > other experiences. Thanks! Marjette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Alice - Dr 's is at Beth Isreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 OK.. Trish see's a doctor at Mass General so it's not Dr 's although I have heard of him. After reading your next message, it sounds as if he is treating the symptoms and that is all you can really do. I'm sure that if you requested a biopsy, he would probably help you get one but even getting one isn't going to change the treatment. If you are on the cocktail and getting good support from Dr 's, you are probably doing what the rest of us are doing. I think whether you have the biopsy is up to you. Getting the diagnosis of Mito without it is not the normand many have a hard time getting one even with the biopsy. You didn't say that there is a family inheritance so I feel he is probably sure of his diagnosis based on symptoms. Alice Alice - Dr 's is at Beth Isreal. Quote Link to comment Share on other sites More sharing options...
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