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milliemaesworld (Guest)
My Daughter Millie was diagnosed with Friedreich Ataxia February last year after 14 months of shock we have finally started to do something.We have done a website ,with the 'about me' page and time in 'hospital' page written by Millie, from her perspective , Millie is only 9 [8 when diagnosed] her Scoliosis and cardiomyopathy have been classed as severe. Please visit the website ,share it and help us raise awareness of this awful condition. Thank you
http://milliemaesworld.co.uk/millie/
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Replied on Thursday, April 21, 2011 5:33 PM
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I have ataxia, but, i am not aware, which type it is. Will it be helpful, if Gene Test is carried out. Moreover, i think it is a hereditary disorder. Do one needs to conduct gene test, on children also. If yes where in Chennai, India the test is conducted.
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Replied on Sunday, October 9, 2011 7:52 AM
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For the last two months, I have had Bacteremia four times with E-Coli ESBL, and Proteus. I have been covered extensively with Gentamicin and Vancomycin. My Creatinine has been rising and is now 131. My GFR has been decreasing, which is now 38. As well, I have lost my sense of balance and I am experiencing a great deal of difficulty walking. Initially I thought this was due to severe anemia, HGB 88, with iron depletion. Now I wonder about ataxia from the aminoglycocides, and if this is the case, is it reversible?
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Replied on Friday, July 20, 2012 8:50 AM
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I got ataxia from interferon shots. Collapsed one day, wound up in hospital for 2 weeks in a coma, had pneumonia, anemia requiring transfusion, dysphagia, dyskinesia and dysarthria, After 3 months of therapy speech is still affected and still cannot walk w/o qualified supervision. Are there any treatments available?
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Replied on Monday, December 3, 2012 7:35 PM
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Last month, I got injured in my head due to road accident. I found some symptoms in me relevant to ataxia. What should i do next ?
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Replied on Saturday, June 21, 2014 2:32 AM
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