Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << She says I will have to get three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of these things hurt, other than the X-rays. >> Chasta--none of these things hurt except the 500-word MMPI, lol! They will all take up your time, but seriously, none of them hurt. J. Mankato, MN RNY 12/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << She says I will have to get three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of these things hurt, other than the X-rays. >> Chasta--none of these things hurt except the 500-word MMPI, lol! They will all take up your time, but seriously, none of them hurt. J. Mankato, MN RNY 12/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. >> Well, it is better than a lower GI. lol! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. >> Well, it is better than a lower GI. lol! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. Take Care Chasta pre-op > > In a message dated 2/18/04 12:51:08 PM, cgoone@y... writes: > > << She says I will have to get > > three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of > > these things hurt, other than the X-rays. >> > > Chasta--none of these things hurt except the 500-word MMPI, lol! They will > all take up your time, but seriously, none of them hurt. > > J. > Mankato, MN > RNY 12/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. Take Care Chasta pre-op > > In a message dated 2/18/04 12:51:08 PM, cgoone@y... writes: > > << She says I will have to get > > three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of > > these things hurt, other than the X-rays. >> > > Chasta--none of these things hurt except the 500-word MMPI, lol! They will > all take up your time, but seriously, none of them hurt. > > J. > Mankato, MN > RNY 12/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << << Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. >> >> The least pleasant part of the upper GI is the goodk you have to drink. At my clinic at least they give you a lot of time to drink it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 << << Thanks ! I am not looking forward to the Upper GI. My hubby had to have one to get his gall bladder taken out, and he said it was not very pleasant. I just cant believe that I am almost there. There looking at getting me in early May!! I cant wait! I am very excited about it. >> >> The least pleasant part of the upper GI is the goodk you have to drink. At my clinic at least they give you a lot of time to drink it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I had my psycho eval. yesterday and I am " SANE " . I'm not crazy. My questionarre was 732 true, false questions. I had just enough bubbling for one day. I have my cardio stress test tomorrow. Vickie pre-op 214.8 BMI--41 Heavenly Scents Candle Company Vickie 523 Dickson Circle Sherman, Texas 75090 website: www.heavenlyscentstx.us e-mail: rasmith@... Re: Diagnostic Testing << She says I will have to get three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of these things hurt, other than the X-rays. >> Chasta--none of these things hurt except the 500-word MMPI, lol! They will all take up your time, but seriously, none of them hurt. J. Mankato, MN RNY 12/99 ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I had my psycho eval. yesterday and I am " SANE " . I'm not crazy. My questionarre was 732 true, false questions. I had just enough bubbling for one day. I have my cardio stress test tomorrow. Vickie pre-op 214.8 BMI--41 Heavenly Scents Candle Company Vickie 523 Dickson Circle Sherman, Texas 75090 website: www.heavenlyscentstx.us e-mail: rasmith@... Re: Diagnostic Testing << She says I will have to get three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of these things hurt, other than the X-rays. >> Chasta--none of these things hurt except the 500-word MMPI, lol! They will all take up your time, but seriously, none of them hurt. J. Mankato, MN RNY 12/99 ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Did they look over your test before you left their office, or did they call you the next day? And if you can remember what kind of questions did they ask you? I am probably going to go in next week and get it done. Take Care Chasta pre-op > I had my psycho eval. yesterday and I am " SANE " . I'm not crazy. My > questionarre was 732 true, false questions. I had just enough bubbling for > one day. I have my cardio stress test tomorrow. > > Vickie > pre-op > 214.8 > BMI--41 > Heavenly Scents Candle Company > Vickie > 523 Dickson Circle > Sherman, Texas 75090 > > website: www.heavenlyscentstx.us > e-mail: rasmith@t... > > Re: Diagnostic Testing > > > > In a message dated 2/18/04 12:51:08 PM, cgoone@y... writes: > > << She says I will have to get > > three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of > > these things hurt, other than the X-rays. >> > > Chasta--none of these things hurt except the 500-word MMPI, lol! They > will > all take up your time, but seriously, none of them hurt. > > J. > Mankato, MN > RNY 12/99 > > > > -------------------------------------------------------------------- -------- > -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Did they look over your test before you left their office, or did they call you the next day? And if you can remember what kind of questions did they ask you? I am probably going to go in next week and get it done. Take Care Chasta pre-op > I had my psycho eval. yesterday and I am " SANE " . I'm not crazy. My > questionarre was 732 true, false questions. I had just enough bubbling for > one day. I have my cardio stress test tomorrow. > > Vickie > pre-op > 214.8 > BMI--41 > Heavenly Scents Candle Company > Vickie > 523 Dickson Circle > Sherman, Texas 75090 > > website: www.heavenlyscentstx.us > e-mail: rasmith@t... > > Re: Diagnostic Testing > > > > In a message dated 2/18/04 12:51:08 PM, cgoone@y... writes: > > << She says I will have to get > > three x-rays done, a breathing test, a EKG, and a Upper GI. Do any of > > these things hurt, other than the X-rays. >> > > Chasta--none of these things hurt except the 500-word MMPI, lol! They > will > all take up your time, but seriously, none of them hurt. > > J. > Mankato, MN > RNY 12/99 > > > > -------------------------------------------------------------------- -------- > -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 < " I know some people have doctors who are constantly questionning whether mito is what they have. I think, in those circumstances, having a diagnosis is really helpful for the patient, so you don't have to explain WHY you/your doctors believe you have mito each time. Once you have a confirmed diagnosis, it isn't left to new specialists to determine how to change around your treatment b/c they don't believe you have mito. " > The points Malisa makes are quite valid. In the case of our daughters, they have had the following: lies: frozen biopsy abnormal but not diagnostic, Atlanta fresh biopsy positive for Complex I Defect (0 activity), Toronto skin biopsy postivie for Complex III and IV Defects, Cleveland Fresh biopsy positive for partical Complex III and IV Defect, Skin biopsy Mayo negative in one assay, a second assay using a different technique pending. : Skin Biopsy Toronto, preliminary report positive, final report negative, Cleveland fresh biopsy positive for an ANT Defect, Mayo skin fibroblast positive for Complex I Defect, second assay pending. Even with all of this, intermittently, new physicians (and on occasion an old physician) refuses to accept the diagnosis. Several of these studies were done because physicians refused to accept results from Atlanta. Others were done because of MSBP allegations with threat of having the children removed from our home and/or withholding of treatment (not just the mito cocktail, but treatment for everything including ventilators, oxygen and medications for major organ system involvement). Every truly knowledgeable physician following our daughters supports the diagnosis fully. The difficulty has resulted because they have been unable to clarify the genetics and because the pathology has differed between the two girls. Dr. Cohen and Dr. Whiteman feel strongly that the diagnosis is confirmed and the differing results come from how the disease is affecting different tissues/tissue samples. The concensus is that they are significantly affected by the disease and treatment is indicated. Dr. Shoffner is now studying the entire mitochondrial genome in an attempt to put the issue to rest. It has been 2 1/2 years and we have yet to receive the results. In the interim, we approach EVERY physician that is new to their cases with extreme caution. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Joanne I have had two fresh muscle biopsies - Atlanta and Cleveland. The Atlanta one showed a complex I defect (0), but genetic defect wasn't found. The Cleveland one showed a problem with 1, but more with 3 and some with 2. The belief is that it all stems from a complex 1 defect. (sister) was diagnosed with a complex 1 & 2, but her mitochondria have poor membrane integetry and mine don't. We've also been told that there is no doubt we have mito, but results were different due to other unknown factors. Our family members who are affected (3 or probably 4 generations) point to a mtDNA defect. laurie > > < " I know some people have doctors who are constantly questionning whether mito is what they have. I think, in those circumstances, having a diagnosis is really helpful for the patient, so you don't have to explain WHY you/your doctors believe you have mito each time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi Laurie, Thanks for sharing. As difficult as travel can be, this is a big part of the reason we travel for mitochondrial disease related medical care. I haven't been able to find any providers in or around Chicago that are accepting of the " differences " between family members. They also feel my girls have some unknown mtDNA defect as they are half sisters by birth and their birth mother (and her family) have definite signs/symptoms that fit the mitochondrial disease picture. Laurie Fitzgerald laurie.fitzgerald@...> wrote: Joanne I have had two fresh muscle biopsies - Atlanta and Cleveland. The Atlanta one showed a complex I defect (0), but genetic defect wasn't found. The Cleveland one showed a problem with 1, but more with 3 and some with 2. The belief is that it all stems from a complex 1 defect. (sister) was diagnosed with a complex 1 & 2, but her mitochondria have poor membrane integetry and mine don't. We've also been told that there is no doubt we have mito, but results were different due to other unknown factors. Our family members who are affected (3 or probably 4 generations) point to a mtDNA defect. laurie Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
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