Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Well if you stay in touch with MDA Digi Chat etc on Mondays, you will remember that I said I finally got an appt. with a Mito specialist on July 17. For which I was to have a special consultation, etc. Well, Columbian Presperterian Hosp. called today to confirm appt. I again asked what Doctor I would be seeing. She read of a Dr. Gordon and some other name. I then said are you sure these are mito specialist, that's what I requested a month ago, TO SEE A MITO SPECIALIST!. I bet all you old times already no what happened, yup, no they are not mito specialist per say. I blew my top and said she better give me the number for Dr. DiMauro or Dr. Hirano. I told her I was not going through the pain and agony of getting there and the money factor to see MDA doctors. So.........she finally got the message I was telling her, and she gave me Dr. DiMauro's number. I called there expecting to speak to a nurse, and it was he himself. What a lovely man, We spoke for well over a 1/2 hour. He gave me a fax number, he called Dr. Hirano, and they set an appt. up for July 24th at Columbian Pres. Hosp. I have to have my doc send him a medical summary for now, and he wants pathology to send a piece of frozen biopsy to him. I feel like I struck Gold. He said just by what I told him and him knowing my neurologist and the doctor that did the biopsy,I have mito. Which I just wanted it confirmed by a specialist, I don't no why, but I sure do feel better. Plus, I would like to no if they can find out more from biopsy. So maybe I am finally on the right road and I am finding out that I am getting less and less nuts. I get something in writing from a mito specialist, I am going to wave it in front of every doctor I have seen. Just had to pass the news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Irene That is wonderful news!!!!! They can often do additional testing on frozen biopsy tissue that might not have been done the first time. It might be that they want to just " see " it. laurie > > > > > > > Well if you stay in touch with MDA Digi Chat etc on Mondays, you > will remember that I said I finally got an appt. with a Mito > specialist on July 17. For which I was to have a special > consultation, etc. Well, Columbian Presperterian Hosp. called today > to confirm appt. I again asked what Doctor I would be seeing. She > read of a Dr. Gordon and some other name. I then said are you sure > these are mito specialist, that's what I requested a month ago, TO > SEE A MITO SPECIALIST!. I bet all you old times already no what > happened, yup, no they are not mito specialist per say. I blew my > top and said she better give me the number for Dr. DiMauro or Dr. > Hirano. I told her I was not going through the pain and agony of > getting there and the money factor to see MDA doctors. > So.........she finally got the message I was telling her, and she > gave me Dr. DiMauro's number. I called there expecting to speak to a > nurse, and it was he himself. What a lovely man, We spoke for well > over a 1/2 hour. He gave me a fax number, he called Dr. Hirano, and > they set an appt. up for July 24th at Columbian Pres. Hosp. I have > to have my doc send him a medical summary for now, and he wants > pathology to send a piece of frozen biopsy to him. I feel like I > struck Gold. He said just by what I told him and him knowing my > neurologist and the doctor that did the biopsy,I have mito. Which I > just wanted it confirmed by a specialist, I don't no why, but I sure > do feel better. Plus, I would like to no if they can find out more > from biopsy. So maybe I am finally on the right road and I am > finding out that I am getting less and less nuts. I get something in > writing from a mito specialist, I am going to wave it in front of > every doctor I have seen. Just had to pass the news. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 It is so wonderful! I am happy for you! It is so validating to finally get to talk to an actual Mito Dr. What my local Docs don't understand is that these guys like DiMauro, Cohen, actually describe your symptoms to you! As well as the other way around! And in my case hearing from Dr. Cohen " and then this happens " was mind blowing! Enjoy the moment. And KNOW that Yes, we have been there and are here for you!. Hugs, Elle issnowwhite54 issnowwhite54@...> wrote: Well if you stay in touch with MDA Digi Chat etc on Mondays, you will remember that I said I finally got an appt. with a Mito specialist on July 17. For which I was to have a special consultation, etc. Well, Columbian Presperterian Hosp. called today to confirm appt. I again asked what Doctor I would be seeing. She read of a Dr. Gordon and some other name. I then said are you sure these are mito specialist, that's what I requested a month ago, TO SEE A MITO SPECIALIST!. I bet all you old times already no what happened, yup, no they are not mito specialist per say. I blew my top and said she better give me the number for Dr. DiMauro or Dr. Hirano. I told her I was not going through the pain and agony of getting there and the money factor to see MDA doctors. So.........she finally got the message I was telling her, and she gave me Dr. DiMauro's number. I called there expecting to speak to a nurse, and it was he himself. What a lovely man, We spoke for well over a 1/2 hour. He gave me a fax number, he called Dr. Hirano, and they set an appt. up for July 24th at Columbian Pres. Hosp. I have to have my doc send him a medical summary for now, and he wants pathology to send a piece of frozen biopsy to him. I feel like I struck Gold. He said just by what I told him and him knowing my neurologist and the doctor that did the biopsy,I have mito. Which I just wanted it confirmed by a specialist, I don't no why, but I sure do feel better. Plus, I would like to no if they can find out more from biopsy. So maybe I am finally on the right road and I am finding out that I am getting less and less nuts. I get something in writing from a mito specialist, I am going to wave it in front of every doctor I have seen. Just had to pass the news. I am only as strong as the coffee I drink, the hairspray I use and the friends I have. To the cool women that have touched my life. Here's to you! author unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Thank you for your wonderful reply. I am still spinning from the good news. --- Elleen emelliebear@...> wrote: > It is so wonderful! I am happy for you! > > It is so validating to finally get to talk to an > actual Mito Dr. What my local Docs don't understand > is that these guys like DiMauro, Cohen, actually > describe your symptoms to you! As well as the other > way around! And in my case hearing from Dr. Cohen > " and then this happens " was mind blowing! > > Enjoy the moment. And KNOW that Yes, we have been > there and are here for you!. > Hugs, > Elle > > issnowwhite54 issnowwhite54@...> wrote: > Well if you stay in touch with MDA Digi > Chat etc on Mondays, you > will remember that I said I finally got an appt. > with a Mito > specialist on July 17. For which I was to have a > special > consultation, etc. Well, Columbian Presperterian > Hosp. called today > to confirm appt. I again asked what Doctor I would > be seeing. She > read of a Dr. Gordon and some other name. I then > said are you sure > these are mito specialist, that's what I requested a > month ago, TO > SEE A MITO SPECIALIST!. I bet all you old times > already no what > happened, yup, no they are not mito specialist per > say. I blew my > top and said she better give me the number for Dr. > DiMauro or Dr. > Hirano. I told her I was not going through the pain > and agony of > getting there and the money factor to see MDA > doctors. > So.........she finally got the message I was telling > her, and she > gave me Dr. DiMauro's number. I called there > expecting to speak to a > nurse, and it was he himself. What a lovely man, We > spoke for well > over a 1/2 hour. He gave me a fax number, he called > Dr. Hirano, and > they set an appt. up for July 24th at Columbian > Pres. Hosp. I have > to have my doc send him a medical summary for now, > and he wants > pathology to send a piece of frozen biopsy to him. I > feel like I > struck Gold. He said just by what I told him and him > knowing my > neurologist and the doctor that did the biopsy,I > have mito. Which I > just wanted it confirmed by a specialist, I don't no > why, but I sure > do feel better. Plus, I would like to no if they can > find out more > from biopsy. So maybe I am finally on the right road > and I am > finding out that I am getting less and less nuts. I > get something in > writing from a mito specialist, I am going to wave > it in front of > every doctor I have seen. Just had to pass the news. > > > > > > > I am only as strong as the coffee I drink, the > hairspray I use and the friends I have. > To the cool women that have touched my life. Here's > to you! author unknown > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 You did hit gold! Dr. DiMauro is no longer practicing per se following a stroke a few years ago, but he knows his mito stuff and if he is consulting with Hirano you will be well looked at. Kristie _____ From: [mailto: ] On Behalf Of issnowwhite54 Sent: Tuesday, June 27, 2006 4:43 PM To: Subject: About Doctors Well if you stay in touch with MDA Digi Chat etc on Mondays, you will remember that I said I finally got an appt. with a Mito specialist on July 17. For which I was to have a special consultation, etc. Well, Columbian Presperterian Hosp. called today to confirm appt. I again asked what Doctor I would be seeing. She read of a Dr. Gordon and some other name. I then said are you sure these are mito specialist, that's what I requested a month ago, TO SEE A MITO SPECIALIST!. I bet all you old times already no what happened, yup, no they are not mito specialist per say. I blew my top and said she better give me the number for Dr. DiMauro or Dr. Hirano. I told her I was not going through the pain and agony of getting there and the money factor to see MDA doctors. So.........she finally got the message I was telling her, and she gave me Dr. DiMauro's number. I called there expecting to speak to a nurse, and it was he himself. What a lovely man, We spoke for well over a 1/2 hour. He gave me a fax number, he called Dr. Hirano, and they set an appt. up for July 24th at Columbian Pres. Hosp. I have to have my doc send him a medical summary for now, and he wants pathology to send a piece of frozen biopsy to him. I feel like I struck Gold. He said just by what I told him and him knowing my neurologist and the doctor that did the biopsy,I have mito. Which I just wanted it confirmed by a specialist, I don't no why, but I sure do feel better. Plus, I would like to no if they can find out more from biopsy. So maybe I am finally on the right road and I am finding out that I am getting less and less nuts. I get something in writing from a mito specialist, I am going to wave it in front of every doctor I have seen. Just had to pass the news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 I would be interested to know the " and then this happens " part. I find that doctors either dont know what happens next, or do not want to say in case they are frightening the patient. For instance, could someone tell me when you have muscle contractions, spasm, cramp " then what happens " or when you have ptosis, double vision and blurriness " then what happens " , or when ...... ? would love to know some sequences or things that go together . yes I do realize it varies with everyone, but it would be good to know what might happen next, after one experiences certain symptoms, for preparedness sake. pamela Re: About Doctors It is so validating to finally get to talk to an actual Mito Dr. What my local Docs don't understand is that these guys like DiMauro, Cohen, actually describe your symptoms to you! As well as the other way around! And in my case hearing from Dr. Cohen " and then this happens " was mind blowing! We Made Changes Your Yahoo! Groups email is all new. Learn More Share Feedback Recent Activity a.. 3New Members b.. 1New Links Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Pamela I wish I could tell you " what is next " , but none of us, including the doctors can tell us this. I do know that my symptom progression has slowed since being on the supplements and watching that I eat properly and get enough sleep, and of course don't over-do. There is still progression. My personal opinion is that if symptoms are treated, then less damage is done, those slowing progression. This would be for things like cramping which can stress and therefore damage muscle cells and blood pressure and blood sugar which can damage to the kidneys more quickly. Just my opinion - not thought to check with a doc on this. laurie > > > > > > > I would be interested to know the " and then this happens " part. I find that > doctors either dont know what happens next, or do not want to say in case > they are frightening the patient. For instance, could someone tell me when > you have muscle contractions, spasm, cramp " then what happens " or when you > have ptosis, double vision and blurriness " then what happens " , or when > ...... ? would love to know some sequences or things that go together . yes > I do realize it varies with everyone, but it would be good to know what > might happen next, after one experiences certain symptoms, for preparedness > sake. pamela > > > Re: About Doctors > > It is so validating to finally get to talk to an actual Mito Dr. What my > local Docs don't understand is that these guys like DiMauro, Cohen, actually > describe your symptoms to you! As well as the other way around! And in my > case hearing from Dr. Cohen " and then this happens " was mind blowing! > > We Made Changes > Your Yahoo! Groups email is all new. > > Learn More > > Share Feedback > > Recent Activity > a.. 3New Members > b.. 1New Links > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Thks Laurie your answers are always so informative. I didn't know that about the cramping. p Re: About Doctors > > It is so validating to finally get to talk to an actual Mito Dr. What my > local Docs don't understand is that these guys like DiMauro, Cohen, actually > describe your symptoms to you! As well as the other way around! And in my > case hearing from Dr. Cohen " and then this happens " was mind blowing! > > We Made Changes > Your Yahoo! Groups email is all new. > > Learn More > > Share Feedback > > Recent Activity > a.. 3New Members > b.. 1New Links > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
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