Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Our ped. Geneticist has a great deal of mito experience. He painstakingly made me go through every relative on both sides- we do not have a lot of info, my husband is older and a lot of their history is undocumented. I am adopted. Regardless , he clearly stated that we were looking for cognitive ( MR) learning problems or disabilities, neurological issues, muscular diseases, diabetes, pancreatitis (sp?) breathing problems/diseases etc… Without a mito diagnosis possible in past generations, these problems were probably the incorrect diagnosis. You are not off base! Can you find another geneticist??? Suzanne, mom to Zoe, almost 3 – complex 1!!! From: lois saunders Sent: Tuesday, April 05, 2005 3:21 PM To: Mito Subject: A very difficult question Hi everyone, I know there are a lot of people who are not comfortable talking about this, so please, I'm not trying to hurt anyone. I'm just trying to make sense of an illogical disease. We just saw a geneticist twice, I dug a lot of family history up and she just blew everything off. Between my aunts and uncles and my cousins, in two generations, we have had 9 kids pass away, 7 at birth or within a few days, the other two at 3 and 4 years old, 7 of which were boys, 2 girls, we've had brain tumor, tremor, MR, birth defects, stigmatosis, leukemia, distonia,and thyroid problems that I have uncovered. I can't believe these things are irrelevant. My question is if anyone has found anything like this in their family history, from everything I've read these are symptons of mito, right? I know this is a subject some of you would rather not talk about, especially with recent events. I am so sorry, and like I said I don't mean this to hurt anyone, we deal with enough already without adding extra hurt to it. I just want to make sure we are truly heading in the right direction, I owe that to Leighann, if theres a possibility we could be looking at something else I need to know. Thanks everybody, Lois Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Suzanne, I also was cut off from part of my family, so it was a lot of work to get the info I did. My father was a drunk (alcoholic is too nice of a term for him), so his entire side of the family was cut off from us. I had to really dig and start cold calling to get the info, I guess I expected more. Most of the kids that passed away were anywhere from 30 to 50 years ago when it happenned, so no way of knowing from what, except one, he was 3 when he went and he was very small for his age and couldn't digest his food, sound familiar? They diognosed him with cystic fibrosis. Thanks so much for letting me know its not in my mind! I think its time for another one also. Thanks for the great reply, Lois FOR LOIS Our ped. Geneticist has a great deal of mito experience. He painstakingly made me go through every relative on both sides- we do not have a lot of info, my husband is older and a lot of their history is undocumented. I am adopted. Regardless , he clearly stated that we were looking for cognitive ( MR) learning problems or disabilities, neurological issues, muscular diseases, diabetes, pancreatitis (sp?) breathing problems/diseases etc… Without a mito diagnosis possible in past generations, these problems were probably the incorrect diagnosis. You are not off base! Can you find another geneticist??? Suzanne, mom to Zoe, almost 3 – complex 1!!! From: lois saunders Sent: Tuesday, April 05, 2005 3:21 PMTo: Mito Subject: A very difficult question Hi everyone, I know there are a lot of people who are not comfortable talking about this, so please, I'm not trying to hurt anyone. I'm just trying to make sense of an illogical disease. We just saw a geneticist twice, I dug a lot of family history up and she just blew everything off. Between my aunts and uncles and my cousins, in two generations, we have had 9 kids pass away, 7 at birth or within a few days, the other two at 3 and 4 years old, 7 of which were boys, 2 girls, we've had brain tumor, tremor, MR, birth defects, stigmatosis, leukemia, distonia,and thyroid problems that I have uncovered. I can't believe these things are irrelevant. My question is if anyone has found anything like this in their family history, from everything I've read these are symptons of mito, right? I know this is a subject some of you would rather not talk about, especially with recent events. I am so sorry, and like I said I don't mean this to hurt anyone, we deal with enough already without adding extra hurt to it. I just want to make sure we are truly heading in the right direction, I owe that to Leighann, if theres a possibility we could be looking at something else I need to know. Thanks everybody, Lois Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Suzanne, I also am adopted and had to try and uncover the medical past in my family..wht a chore. I have found most of my immediate relatives but none want to talk..they all think I am crazy. I have found that my mother has thyroid issues, my aunt ( moms sister )diabetes along with two of her four sons. > that is as far as I have gotten. everyone else just keeps me in the dark and keeps hanging up on me.. > _____ > > From: lois saunders [mailto:loisanns@e...] > Sent: Tuesday, April 05, 2005 3:21 PM > To: Mito > Subject: A very difficult question > > > > Hi everyone, > > > > I know there are a lot of people who are not comfortable talking about this, > so please, I'm not trying to > > hurt anyone. I'm just trying to make sense of an illogical disease. We just > saw a geneticist twice, I > > dug a lot of family history up and she just blew everything off. Between my > aunts and uncles and my cousins, > > in two generations, we have had 9 kids pass away, 7 at birth or within a few > days, the other two at 3 and 4 years > > old, 7 of which were boys, 2 girls, we've had brain tumor, tremor, MR, birth > defects, stigmatosis, leukemia, > > distonia,and thyroid problems that I have uncovered. I can't believe these > things are irrelevant. > > > > My question is if anyone has found anything like this in their family > history, from everything I've read > > these are symptons of mito, right? I know this is a subject some of you > would rather not talk about, especially > > with recent events. I am so sorry, and like I said I don't mean this to > hurt anyone, we deal with enough > > already without adding extra hurt to it. I just want to make sure we are > truly heading in the right direction, > > I owe that to Leighann, if theres a possibility we could be looking at > something else I need to know. > > > > Thanks everybody, > > Lois > > > > > > > > Please contact mito-owner with any problems or questions. > > > > Please contact mito-owner with any problems or questions. > > > > > _____ > > Quote Link to comment Share on other sites More sharing options...
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