Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Hello everyone, I'd like to introduce myself, and share a little about my family. First, to tell you my name, and how I found this group. My name is Cindy, but my family and friends call me Cin. I was at a picnic a couple of weeks ago,, and one of your members, Ruth, told me about the group. I have read only a few messages, but thought I'd jump right in, and get my feet wet. That's usually what I do, but the thing is, I go head-first, so my feet are the last to get wet . Well, to get to my family history, we are just now going through the process of being tested and confirmed with mitochondrial myopathy. My older sis is the guinea pig in all of this, and she's had an EMG and muscle biopsy, among other tests. The muscle biopsy did show abnormal mitochondria, so now the University of Michigan hospital has sent her tissue samples on to another clinic that specializes in mito diagnoses, and we are awaiting further information on that. Although it isn't 100% certain yet that it is MM, they are quite sure on this, and it's just a matter of formal diagnosis from here on out. Our family has a history of deafness, and many of us have bipolar disorder, or at least some type of mental dysfunction (mood swings, depression, SAD, etc.). There are several in my family with neuropathy, as well. When my sis went to the U of M in Ann Arbor to see the neurologist, she (the Dr.) thought right off it was either mito, or else Charcot-Marie-Tooth syndrome. Now with the muscle biopsy completed, they are leaning more fully toward the mito. I had heard of the mito before, but I mistakenly believed that it can only be passed on from the mother to the children. So, in my limited knowledge, I threw that out, as it was impossible for us, since the deafness, and other symptoms were passed on to my mother from her father, and his father passed it on to him. Well, lo and behold, there are some forms of mito that the father can pass on to the children, too. So, that's the medical history as far as our diagnosis, and now comes the fun of learning all about this disease, how it may affect us, how we can manage the symptoms, etc. And this is where I hope this group will come in, and be able to help us as we learn more about it. And of course, I'm a whimp, I don't like pain, so I'll be blubbering and slobbering about in here from time to time, while trying to dry the tears and blow my nose at the same time . I'm sure I'll have many questions for everyone, and will try to make some sense of all this, somehow. So, here I am, the new kid on the block, and I look forward to getting to know everyone. Feel free to ask me any questions you might have about our family, our history, or about just plain old me. I have no worry about sharing anything, as my two sister's already have enough on me to blackmail me for the next hundred years or so, LOL. I hope to hear from the group real soon, and I'm so glad Ruth has shared her group with me. Take care, Cin Quote Link to comment Share on other sites More sharing options...
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