Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hi Vivian, I'm so glad you had such a good appointment with Dr. Shoffner. I'm headed down there on the 17th. He, along with all the mito doc's seem to be so compassionate and knowledgeable. If anyone can figure out what's going on with you he can I'm sure. Good luck and hope you get your answers soon. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Vivian You probably are in crash mode from the trip and surgery. You need to sleep as much as your body wants and it will recover more quickly. I know is is not the medicine that most people would choose (not a quick fix), but sleep works for me. laurie > The appointment went really well. We were able to get Angel flights > down there. The first was wonderful and the second flew two hours in > turburlance. I threw up most of the way. But then we were able to > stay at the Mc house and it was such a blessing to us. > It is so comforting to be around others who just " know " . > > We met with Shoffner and I was blown away about how much he knew about > my case. I asked him that if he didn't find anything would he refer me > in the right direction. He told me that he doesn't go on fishing > expeditions and that he thinks we are in the right area. > > The proceedure went fine, except that he wanted a spinal tap and I > have a bad history with them...and sure enough...I was in tremendous > pain from the spinal fluid leaking. They kept me overnight for pain > control and we missed our plane back home. > > Because of Katrina, we were told that it might take days to get us > out. But in the end the two original pilots heard about our problem > and came and got us anyway. > > Shofner doesn't think I have MS as well; but that it is all apart of > the mito...but we will see as he sent the spinal fluid to re-examine > it for that as well. > > They told me four to six weeks for the results...I thought I heard > that it would be longer on the forum. > > I am hopeful for the first time in a long time. He sent a summary of > the visit to my physicians and copied me the week after I was there. > > He seems like a brilliant and kind man...I am really hopeful to have > answers that can make a difference. > > In the mean time...all I do is sleep! Is anyone here taking any awake > meds like provigil or such and how does it work with you. > > I am so grateful to have gotten in to see him and to have him look at > my records and order the appropriate tests. > > I waited so long to get in and then it seemed to happen over night. I > am hopeful that it won't be months until I get answers...but it's not > like I'm going anywhere! > > Love to my favorite on line people! > > Vivian > > > > > > > hi Vivian as best I recall my results took several months....are you > getting > > the results directly from Dr Shoffner or through a physician you are > working > > with. With myself it was the latter and may have delayed things. > How did > > things go? Vivian > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Vivian it all depends on a variety of things....you had the trip and a good deal of stress I suspect I usually rest extra both before and after that type of thing. Just get as much rest as your body tells you it needs. Feel better soon. Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 ---I am glad to hear that you had such a positive experience with Dr Shoffner. Keep us posted on the results. Rest well from your trip. Dawn Anich In , " schumachervivian " wrote: > The appointment went really well. We were able to get Angel flights > down there. The first was wonderful and the second flew two hours in > turburlance. I threw up most of the way. But then we were able to > stay at the Mc house and it was such a blessing to us. > It is so comforting to be around others who just " know " . > > We met with Shoffner and I was blown away about how much he knew about > my case. I asked him that if he didn't find anything would he refer me > in the right direction. He told me that he doesn't go on fishing > expeditions and that he thinks we are in the right area. > > The proceedure went fine, except that he wanted a spinal tap and I > have a bad history with them...and sure enough...I was in tremendous > pain from the spinal fluid leaking. They kept me overnight for pain > control and we missed our plane back home. > > Because of Katrina, we were told that it might take days to get us > out. But in the end the two original pilots heard about our problem > and came and got us anyway. > > Shofner doesn't think I have MS as well; but that it is all apart of > the mito...but we will see as he sent the spinal fluid to re- examine > it for that as well. > > They told me four to six weeks for the results...I thought I heard > that it would be longer on the forum. > > I am hopeful for the first time in a long time. He sent a summary of > the visit to my physicians and copied me the week after I was there. > > He seems like a brilliant and kind man...I am really hopeful to have > answers that can make a difference. > > In the mean time...all I do is sleep! Is anyone here taking any awake > meds like provigil or such and how does it work with you. > > I am so grateful to have gotten in to see him and to have him look at > my records and order the appropriate tests. > > I waited so long to get in and then it seemed to happen over night. I > am hopeful that it won't be months until I get answers...but it's not > like I'm going anywhere! > > Love to my favorite on line people! > > Vivian > > > > > > > hi Vivian as best I recall my results took several months....are you > getting > > the results directly from Dr Shoffner or through a physician you are > working > > with. With myself it was the latter and may have delayed things. > How did > > things go? Vivian > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Laurie, I think you are right, but it is so hard to deal with in the moment. How long does it take you to recover from a crash? Thanks, Vivian > > > hi Vivian as best I recall my results took several months....are you > > getting > > > the results directly from Dr Shoffner or through a physician you are > > working > > > with. With myself it was the latter and may have delayed things. > > How did > > > things go? Vivian > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 I'm so glad to hear things went well and that you liked Dr. S. schumachervivian wrote: >The appointment went really well. We were able to get Angel flights >down there. The first was wonderful and the second flew two hours in >turburlance. I threw up most of the way. But then we were able to >stay at the Mc house and it was such a blessing to us. >It is so comforting to be around others who just " know " . > >We met with Shoffner and I was blown away about how much he knew about >my case. I asked him that if he didn't find anything would he refer me >in the right direction. He told me that he doesn't go on fishing >expeditions and that he thinks we are in the right area. > >The proceedure went fine, except that he wanted a spinal tap and I >have a bad history with them...and sure enough...I was in tremendous >pain from the spinal fluid leaking. They kept me overnight for pain >control and we missed our plane back home. > >Because of Katrina, we were told that it might take days to get us >out. But in the end the two original pilots heard about our problem >and came and got us anyway. > >Shofner doesn't think I have MS as well; but that it is all apart of >the mito...but we will see as he sent the spinal fluid to re-examine >it for that as well. > >They told me four to six weeks for the results...I thought I heard >that it would be longer on the forum. > >I am hopeful for the first time in a long time. He sent a summary of >the visit to my physicians and copied me the week after I was there. > >He seems like a brilliant and kind man...I am really hopeful to have >answers that can make a difference. > >In the mean time...all I do is sleep! Is anyone here taking any awake >meds like provigil or such and how does it work with you. > >I am so grateful to have gotten in to see him and to have him look at >my records and order the appropriate tests. > >I waited so long to get in and then it seemed to happen over night. I >am hopeful that it won't be months until I get answers...but it's not >like I'm going anywhere! > >Love to my favorite on line people! > >Vivian > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 In addition to the sleep, make sure you get up for nutritious meals and keep yourself fully hydrated, maybe with Gatoraid or something similar. If you are on the mito cocktail, some docs suggest your temporally upping your COQ10 dose for a few days. doeschumachervivian wrote: >Laurie, > >I think you are right, but it is so hard to deal with in the moment. >How long does it take you to recover from a crash? > >Thanks, >Vivian > > > > >>> >>> >>>>hi Vivian as best I recall my results took several >>>> >>>> >months....are you > > >>>getting >>> >>> >>>>the results directly from Dr Shoffner or through a physician >>>> >>>> >you are > > >>>working >>> >>> >>>>with. With myself it was the latter and may have delayed >>>> >>>> >things. > > >>>How did >>> >>> >>>>things go? Vivian >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Vivian It takes me about 3-4 days to get over a crash as long as I can do the right things right away. The longer I push myself, the longer it takes. I was not getting enough sleep due to apnea, cramps and myoclonus. This lack of sleep caused more symptoms, so it is taking me a long time to really feel as if I might be getting over it. The doctors upped my CPAP pressure to reduce apnea and I have added Gatorade to my daily fluid intake and doc gave me Lucerna to help me sleep. Today is the first day I have not had to sleep any during the day. I hope you can let yourself recover. I know it is hard, but I have finally learned that the earlier I take action, the quicker I recover. They say the average person should allow 6 weeks recovery time for even minor surgery. Hugs, laurie > > > > hi Vivian as best I recall my results took several > months....are you > > > getting > > > > the results directly from Dr Shoffner or through a physician > you are > > > working > > > > with. With myself it was the latter and may have delayed > things. > > > How did > > > > things go? Vivian > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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