Guest guest Report post Posted December 29, 2003 HuGSS Dawn, because I wish so often that all our angels could be with us. If the tears we cried could bring them back bit by bit, they would already be here. I will be thinking about your angels on the second of January, my youngest son also was stillborn on the 2 Jan 03. love, Ghislaine Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 17, 2004 Thanks for the info- another pill to add to the already 8 a meal. Go figure. We have not had the tube replaced by the button yet. We are doing an MRS at the same time and there were scheduling conflicts with that part so we don't get the switch over until April 20th. I am looking forward to having the button. He developed a granulation. I took everyones suggestion and got the steroid cream. It really worked quickly to clear it up. What have you decided about Shoffner? I've been praying that things work out for you guys. Geri-Anne and Wyatt, Complex I- -- In Mito , " thefiveofus02 " wrote: > Geri-Anne, > > On top of IVIG they can give prophalactic antibiotics instead. My > immuno def. was not as bad as 's so this is what we are > trying. It has actually helped. Just one pill a day and I have > avoided any major illnesses all winter (knock on wood)! > > Hows the button?? hope all is well, Dawn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 17, 2004 Thanks for the info- another pill to add to the already 8 a meal. Go figure. We have not had the tube replaced by the button yet. We are doing an MRS at the same time and there were scheduling conflicts with that part so we don't get the switch over until April 20th. I am looking forward to having the button. He developed a granulation. I took everyones suggestion and got the steroid cream. It really worked quickly to clear it up. What have you decided about Shoffner? I've been praying that things work out for you guys. Geri-Anne and Wyatt, Complex I- -- In Mito , " thefiveofus02 " wrote: > Geri-Anne, > > On top of IVIG they can give prophalactic antibiotics instead. My > immuno def. was not as bad as 's so this is what we are > trying. It has actually helped. Just one pill a day and I have > avoided any major illnesses all winter (knock on wood)! > > Hows the button?? hope all is well, Dawn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 17, 2004 Thanks for the info- another pill to add to the already 8 a meal. Go figure. We have not had the tube replaced by the button yet. We are doing an MRS at the same time and there were scheduling conflicts with that part so we don't get the switch over until April 20th. I am looking forward to having the button. He developed a granulation. I took everyones suggestion and got the steroid cream. It really worked quickly to clear it up. What have you decided about Shoffner? I've been praying that things work out for you guys. Geri-Anne and Wyatt, Complex I- -- In Mito , " thefiveofus02 " wrote: > Geri-Anne, > > On top of IVIG they can give prophalactic antibiotics instead. My > immuno def. was not as bad as 's so this is what we are > trying. It has actually helped. Just one pill a day and I have > avoided any major illnesses all winter (knock on wood)! > > Hows the button?? hope all is well, Dawn Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2005 --- Hi Debbie, Yes this was a mito Dr and I feel he is very good. He admitted to not be very knowledgable about Adults. What mito Dr is? Go figure that my symptoms were mild when I saw the neurologist. So much of this is muscular. I wish I would of spoke up more and showed the Dr how my muscles tremor. You can not see that with a gown on that reaches your ankles. I did not do a very good job of communicating my problems during the appointment and now I am beating myself up for it. All I know is that my muscles are one of my biggest problems and I do not think that is autoimmune. I guess I just need to wait things out for a while. But that is not my personality. I am a doer, not a person who waits. Dawn Anich In , " dsm322 " wrote: > > Hi Dawn, > Is the Mayo doctor a specialist in mito? Your symptoms are almost > exactly like mine and I have a mito diagnosis. I go to Dr. Cohen at > the Cleveland Clinic. > My muscles react as yours does and I have the same gait problem. > I have also had problems with dizziness as Lea wrote about. I > wondered if it was due to all the medicine, though that seems > unlikely because I take the meds all the time and the dizziness just > happens off and on. > Debbie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2005 Some of the doctors who said my symptoms were " all in your head " and " nothing's wrong with you " were also neuromuscular disease experts. One guy was ranked as one of the top 100 neurologists in the country, consistently winning " best doctor at this hospital " awards. I hear you on the " doer " versus " waiter " - that's why I decided to get the fresh muscle biopsy - it's all talk until the definitive testing is done. I was pregnant and dragged my two kids and husband 1,000 miles when I got the testing done - I'd do it again in a minute. (I am not a doctor, this isn't medical advice, etc., etc.) Having given such a glowing view of my fresh muscle biopsy testing, I wonder - has anyone been UNhappy about their fresh muscle biopsy testing, either the experience or the results? I have to say I chickened out of the spinal tap they tried to do at the same time as the muscle biopsy, but part of that was to confirm or deny MS, and since the mito testing results were squirrely, they are pretty sure I don't have MS. Take care, RH > > > > Hi Dawn, > > Is the Mayo doctor a specialist in mito? Your symptoms are > almost > > exactly like mine and I have a mito diagnosis. I go to Dr. Cohen > at > > the Cleveland Clinic. > > My muscles react as yours does and I have the same gait problem. > > I have also had problems with dizziness as Lea wrote about. I > > wondered if it was due to all the medicine, though that seems > > unlikely because I take the meds all the time and the dizziness > just > > happens off and on. > > Debbie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 21, 2005 Hi Dawan, You sound like me. Different docs putting different lables on me (or some of them just saying it's in my head), having various abnormalities showing up in tests but no one seems able to put it all together Good luck in your hunt for diagnosis, celia > > Hi Dawn, > Is the Mayo doctor a specialist in mito? Your symptoms are almost > exactly like mine and I have a mito diagnosis. I go to Dr. Cohen at > the Cleveland Clinic. > My muscles react as yours does and I have the same gait problem. > I have also had problems with dizziness as Lea wrote about. I > wondered if it was due to all the medicine, though that seems > unlikely because I take the meds all the time and the dizziness just > happens off and on. > Debbie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 21, 2005 Hi Dawan, You sound like me. Different docs putting different lables on me (or some of them just saying it's in my head), having various abnormalities showing up in tests but no one seems able to put it all together Good luck in your hunt for diagnosis, celia > > Hi Dawn, > Is the Mayo doctor a specialist in mito? Your symptoms are almost > exactly like mine and I have a mito diagnosis. I go to Dr. Cohen at > the Cleveland Clinic. > My muscles react as yours does and I have the same gait problem. > I have also had problems with dizziness as Lea wrote about. I > wondered if it was due to all the medicine, though that seems > unlikely because I take the meds all the time and the dizziness just > happens off and on. > Debbie Quote Share this post Link to post Share on other sites
