http://myotonicdystrophy.com Information About Myotonic Dystrophy Sun, 26 Feb 2012 09:53:17 +0000 hourly 1 http://wordpress.org/?v=3.3.1 http://myotonicdystrophy.com/#comment-248 Caria Pacheco Sun, 26 Feb 2012 09:53:17 +0000 http://myotonicdystrophy.com/wp/?page_id=6#comment-248 Hi, I came across your blog as I searched for help in understanding my daughters and other children's issues. You cannot begin to understand the relief I got from your informative text. Quick history, my daughter was diagnosed with hypotonic cerebral palsy at 18 months ,she is now 16. She has an iq of 55 and is to others who first meet her not obvious in any way. Her fathers maternal grandmother died of myotonic history,her sister did not appear to have it but had a son with it. I believe with all I have that my children have it,to some degree.is it possible to have been misdiagnosed as cerebral palsy. They keep telling me it is unlikely that she has it if dad and his mom,grandma, don't have it but I'm not convinced. They all display very strange symptoms. The page that shows the ADHD sort of behaviors and reciting commercials, copying adult conversations and I can go on and on describes my 10 year old son perfectly.you mentioned a new form type 2 was just recently discovered. Could it be they missed it when they tested dad a few years ago? My mother in law was never tested but my ex husband was and came back as negative. My daughter was never tested, should she be? They are very "weird" ,I use that term very lovingly,but I just cant describe it. All have learning disabilities or have had. You just know something is off. My son is beginning to be teased at school.other kids sense he is " stupid". ( his own telling) and exclude him. He is not smart at all! Yet he can sing entire commercials he has heard and change his voice while doing it,also plays Xbox like an expert? As a mother to four children from that marriage all displaying these problems,and my daughter being the most affected ,it has been a long 18 years trying to help my kids . Not their fault dads side of family has these issues,lol.in closing grandma also has a fraternal twin who gave barth to two sons with maple urine sugar disease and both are mentally retarded as well. I have spent years telling my kids doctors that my children have some form of inheritance of this disease,gene or no gene they are affected. Please send me any info and sorry if I'm rambling on and on,just so happy with your blog:) Hi, I came across your blog as I searched for help in understanding my daughters and other children’s issues. You cannot begin to understand the relief I got from your informative text. Quick history, my daughter was diagnosed with hypotonic cerebral palsy at 18 months ,she is now 16. She has an iq of 55 and is to others who first meet her not obvious in any way. Her fathers maternal grandmother died of myotonic history,her sister did not appear to have it but had a son with it. I believe with all I have that my children have it,to some degree.is it possible to have been misdiagnosed as cerebral palsy. They keep telling me it is unlikely that she has it if dad and his mom,grandma, don’t have it but I’m not convinced. They all display very strange symptoms. The page that shows the ADHD sort of behaviors and reciting commercials, copying adult conversations and I can go on and on describes my 10 year old son perfectly.you mentioned a new form type 2 was just recently discovered. Could it be they missed it when they tested dad a few years ago? My mother in law was never tested but my ex husband was and came back as negative. My daughter was never tested, should she be? They are very “weird” ,I use that term very lovingly,but I just cant describe it. All have learning disabilities or have had. You just know something is off. My son is beginning to be teased at school.other kids sense he is ” stupid”. ( his own telling) and exclude him. He is not smart at all! Yet he can sing entire commercials he has heard and change his voice while doing it,also plays Xbox like an expert? As a mother to four children from that marriage all displaying these problems,and my daughter being the most affected ,it has been a long 18 years trying to help my kids . Not their fault dads side of family has these issues,lol.in closing grandma also has a fraternal twin who gave barth to two sons with maple urine sugar disease and both are mentally retarded as well. I have spent years telling my kids doctors that my children have some form of inheritance of this disease,gene or no gene they are affected. Please send me any info and sorry if I’m rambling on and on,just so happy with your blog:)

]]> http://myotonicdystrophy.com/#comment-246 Kristal Anderson Sat, 25 Feb 2012 00:01:05 +0000 http://myotonicdystrophy.com/wp/?page_id=6#comment-246 My new baby has congenital myotonic dystrophy and the doctors have said in her condition she will only get better. Does that make any sence,i have only readthat the type of md she has does not get better.Please help me understand this better. Thank you!!! My new baby has congenital myotonic dystrophy and the doctors have said in her condition she will only get better. Does that make any sence,i have only readthat the type of md she has does not get better.Please help me understand this better. Thank you!!!

]]> http://myotonicdystrophy.com/#comment-153 son Tue, 24 Jan 2012 19:10:48 +0000 http://myotonicdystrophy.com/wp/?page_id=6#comment-153 my father has this disease and it has just set in my father has this disease and it has just set in

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