Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi, Thanks to everyone who was praying for me during my trip to CCF. I'm exhausted and it a much harder trip on me than ones in the past but I'm HOME now. Dr. Falk was great and had a sense of humor which helped. He said he suspects its just the mito affecting the smooth muscle in my colon and there isn't anything to do for that but treat symptomatically. He said since I haven't responded to that he could remove my colon and give me an ileostomy bag. Ugh. I don't think I'm ready for that. My motility is bad and makes me feel terrible, but I don't think I'm ready for something tha drastic. I have a lot of testing scheduled for April 1st and 2nd to rule out other causes although he doesn't expect to find anything. That will be anorectal manometry, defography, barrium enema and something else. I'm having a colonic transit test done locally. Dr. Cohen is still befuddled with me. He said I have raised alot of conversations. lol There is a new test for creatine deficiency and he said although it would be a long shot because it is extremely rare that my carnitine deficiency is extremely rare and I could have them both. He is also looking in to MNGIE. He said clinically I totally fit that. He ordered another sleep study. Ugh. I haven't decided where I want to that have that done yet. I can't have it locally, but I've heard of a mito sleep clinic place starting some place so I want to check into that. He also mentioned me going on TPN. I am having considerable muscle wasting as I have no more fat to loose. He said that could be contributing to my gut probs because I'm loosing muscle there as well. It will all depend on the test results and if I loose anymore weight. Dr. Deal was great. Very brilliant doc. He ordered many bone x-rays and labs. If my bones have sealed he is considering starting me on Forteo shots for my severe osteo. Downside is there no long term research to know the life long effects and the trials were halted due to it causing oteosarcoma in rats. The trip was really hard and painful, and ultimately there were no answers just alot more questions and testing but I feel good about how the appts went. I know I'm so blessed to have such caring and intelligent docs. Quote Link to comment Share on other sites More sharing options...
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