Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 It is the same in our case, Darla. Dr. Cohen never actually came out and said, " Craig has mito, " - just that the biopsy " points to a " disorder of energy metabolism. " In Craig's case I guess that is because the biospy was clearly abnormal with ragged red-fibers and his clinical pictures fits in many ways, but his respiratory chain and fatty acid oxidation appeared normal. Craig's lactic acid and amino acids were always normal as well. (His younger brothers have not been though and he is not even diagnosed with anything yet!) Craig does not seem to fit any " classical " mito category , as Dr. Cohen put it. Donna H. > > > > > > As I have been sharing with you all, goes to see Dr. Saneto > > > tomorrow at 2:00. I am glad to see that he is the guest speaker > > > tomorrow night on the chat. I was also glad to see what was > > written > > > about him. We have never seen him before. Our normal neurologist > > is > > > referring us to him. I always get a little nervous meeting new > > > doctor's. > > > Please pray that our muscle biopsy results are all in. I know > > that > > > alot of them are in I just haven't been told yet. > > > I should be able to sleep tonight and not let the anxiety get to > > meas > > > and I spent several hours in the ER tonight. He loves to > > > climb and tonight he was on a stump at a friends house and well, > > he > > > has 4 stitches in his scrotum! He always waits for me to turn my > > > back and does what he was told not to do!! Typical boy huh!?! > > > > > > You are allin my prayers and thank you all for the support. > > > > > > God Bless, > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Dr. Cohen outright diagnosed Grace with mito, even though she is non specific. He did make mention that having a positive result from the Electron Microscope that it would make the dianosis unquestionable. Maybe because Grace does have mutated mitochondria, they were able to actually diagnose. Hmmmm Maybe this helps someone Get the NEW version of MSN Messenger - it's FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 This disease is so mind boggling! How so many have it and so many are so different but alike too (if that makes any sense). It's weird too that Craig and have similar symptoms but their biopsies are different. craigsstory wrote: It is the same in our case, Darla. Dr. Cohen never actually came out and said, "Craig has mito," - just that the biopsy "points to a "disorder of energy metabolism." In Craig's case I guess that is because the biospy was clearly abnormal with ragged red-fibers and his clinical pictures fits in many ways, but his respiratory chain and fatty acid oxidation appeared normal. Craig's lactic acid and amino acids were always normal as well. (His younger brothers have not been though and he is not even diagnosed with anything yet!) Craig does not seem to fit any "classical" mito category , as Dr. Cohen put it.Donna H.> > >> > > As I have been sharing with you all, goes to see Dr. Saneto> > > tomorrow at 2:00. I am glad to see that he is the guest speaker> > > tomorrow night on the chat. I was also glad to see what was> > written> > > about him. We have never seen him before. Our normal neurologist> > is> > > referring us to him. I always get a little nervous meeting new> > > doctor's.> > > Please pray that our muscle biopsy results are all in. I know> > that> > > alot of them are in I just haven't been told yet.> > > I should be able to sleep tonight and not let the anxiety get to> > meas> > > and I spent several hours in the ER tonight. He loves to> > > climb and tonight he was on a stump at a friends house and well,> > he> > > has 4 stitches in his scrotum! He always waits for me to turn my> > > back and does what he was told not to do!! Typical boy huh!?!> > >> > > You are allin my prayers and thank you all for the support.> > >> > > God Bless,> > >> > > > >> >> >> >> >> > Please contact mito-owner with any problems or questions.> >> >> >> > ---------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 We recently had our mito doctor (metabolic specialist) tell us that they are really learning from the patients as they go along. Things he believed a year ago have been disproven or changed as he sees more patients. We had one biopsy that did not show much, are in the struggle with many others on this group about whether we do any more on the same kid or one of the other affected kids. Rod > > > > > > > > As I have been sharing with you all, goes to see Dr. > Saneto > > > > tomorrow at 2:00. I am glad to see that he is the guest > speaker > > > > tomorrow night on the chat. I was also glad to see what was > > > written > > > > about him. We have never seen him before. Our normal > neurologist > > > is > > > > referring us to him. I always get a little nervous meeting new > > > > doctor's. > > > > Please pray that our muscle biopsy results are all in. I know > > > that > > > > alot of them are in I just haven't been told yet. > > > > I should be able to sleep tonight and not let the anxiety get > to > > > meas > > > > and I spent several hours in the ER tonight. He loves > to > > > > climb and tonight he was on a stump at a friends house and > well, > > > he > > > > has 4 stitches in his scrotum! He always waits for me to turn > my > > > > back and does what he was told not to do!! Typical boy huh!?! > > > > > > > > You are allin my prayers and thank you all for the support. > > > > > > > > God Bless, > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > questions. > > > > > > > > > > > > --------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.