Guest guest Posted February 29, 2004 Report Share Posted February 29, 2004 Hi all, I wanted to thank everyone for their thoughts and prayers while I was in the hospital. I was in there for a week and got home on Thurs. Still more questions than answers, but I feel like I have a good team of doctors trying to figure everything out. Over the past month I have been extremely weak and have also been having more episodes of being "out of it" in the evenings. My blood sugars are also not as stable as usual. Last year I had similar symptoms and it turned out to be a central line infection so we are trying to cover all the bases since I don't have the usual symptoms with infections. They did a 3 day EEG to see if I was having seizures. Unfortunately I didn't have any episodes while I was there so now I have to do another 3 day EEG monitor at home. My gut feeling is that I am having episodes b/c of a lack of energy to my brain and that they aren't seizures. When I get them, I am so weak that I literally don't have the energy to talk or think straight and feel very distant from everything. Does anyone else get this type of reaction? Usually it will happen at the end of the day and I will have autonomic symptoms of heart pounding and getting really hot and within a minute or two all the energy just drains right out of me. It's pretty dramatic and only happens when I am feeling sick for some other reason. My blood pressure has been taken multiple times during these episodes and is always normal, as is my blood sugar. At any rate, they did a really thorough work up and the one abnormality that did show up was an abnormal SPECT scan of my brain. It's a nuclear medicine test that looks at the function of the brain. Mine was abnormal in the parietal and occipital lobes. The neurologist I see said that she has seen similar non specific changes in her other mito patients and she feels it represents a lack of normal metabolism in the brain. She said that most of the time the regular MRI of the structure of the brain is normal even when this test is abnormal. I need to get this test redone when I am feeling better to see if it is only abnormal when I am having these episodes. Has anyone else had this test done? They also worked me up for adrenal insufficiency. It looks like I have okay adrenal function, although there is still some question about this so I may have to have further testing done. I also have to see my infectious disease doctor tomorrow since the blood cultures came back positive last week. The doctors there said it was a contaminant, but my PCP wants to make absolutely sure it isn't b/c my symptoms of infection were so similar last year. Sorry that this e-mail ended up being so long! I really appreciate all of your support and prayers. They mean a lot. Malisa Quote Link to comment Share on other sites More sharing options...
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