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Re: Need some advice on tests

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  • Dana
    Hi Sally!! My prayers are with you and Oscar and I hope that you get a dx soon. Most of us can relate to the frustration of just wanting to know why and what.
    Message 1 of 4 , Jul 31, 2007
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      Hi Sally!! My prayers are with you and Oscar and I hope that you get
      a dx soon. Most of us can relate to the frustration of just wanting
      to know why and what. Unfortunately, I do not have any brilliant
      answers or even suggestions but I did want to share with you that my
      son, Cason, had a muscle biopsy when he was 4 weeks old also.
      Everything they tested for came back negative and the neuro we had
      said that happens alot in newborns as there muscle is too inmature?!
      He explained to us that a more accurate biopsy could be done when
      Cason was around 6 months old. Cason had such problems with
      anesthesia that we did not do a 2nd biopsy until he was 2 yrs old. It
      was then that we received the MTM dx. I am sorry that I could not be
      a bigger help and I hope that you get the answers that you seek soon.
      God Bless. Dana and Cason

      --- In Myotubular_Myopathy@yahoogroups.com, Sally Eubanks
      <sallyeu@...> wrote:
      >
      > Hi everyone--
      >
      > I wrote a message a little while ago about my son,
      > Oscar. He is 4 months old, still in ICU, and
      > undiagnosed. The muscle biopsy (taken at 4 weeks old)
      > came back negative for myopathy, and the genetic test
      > for MTM just came back negative as well. However, we
      > (and a neurologist who was called in to consult in
      > this case) are convinced that he has MTM. Just to
      > remind everyone, I am an American living in Austria.
      > We've only been here for a year, and I'm a little bit
      > lost both in the language and the medical system.
      > They are now considering a second muscle biopsy. Does
      > anyone know of any doctors we could consult, or have
      > any suggestions about something we could ask our
      > medical staff to do in order to help with a diagnosis?
      > I would also be interested to hear if there are any
      > diseases that look JUST like MTM, but are something
      > else.
      >
      > Thanks in advance
      > Sally
      >
      >
      >
      >
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