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[Myotubular_Myopathy] Update on us

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  • Sally Eubanks
    Hello to the group-- I thought I d just say hello again and comment on what amazing information you ve compiled here. I ve gone and searched through some old
    Message 1 of 2 , Sep 2 4:53 AM
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      Hello to the group--

      I thought I'd just say hello again and comment on what
      amazing information you've compiled here. I've gone
      and searched through some old messages and have a much
      clearer idea about how the diagnosis and treatments
      have gone for many of you. This has been really
      helpful! And that amazing Quest article was really
      helpful and I forwarded along the link to friends and
      family.

      I've gotten ahold of some of Oscar's medical records
      and understand his lack of diagnosis a bit better. It
      just makes me wonder why some people are able to get a
      result from an early muscle biopsy and others not.
      anyone know a reason for this?

      Based on what I've read, a serious problem in the eye
      area is a good indication of a centronuclear myopathy.
      it's the one reason i'm holding onto a personal
      diagnosis of MTM for my own son.

      We're still in the ICU, and i don't really know what
      to say about that. There are ups, and there are
      downs, and we're just trying to navigate them.

      By the way, Rachel and Nadine, I sent both of you
      personal emails. Did they not go through? You can
      email me at sallyeu@...



      ____________________________________________________________________________________
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    • rachel wriglry
      hi sally sorry to hear your still in icu but i have found the advice here from ppl very helpfull esp when times are hard there make think seem easier and there
      Message 2 of 2 , Sep 2 7:02 AM
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        hi sally
        sorry to hear your still in icu
        but i have found the advice here from ppl very helpfull esp when times are hard there make think seem easier and there try and give good advice this group has helped me to come to terms with my both my sons disabiltys and i know if im ever stuck on a question or need an answer for something everyone will try and help to answer them
        its the same with marconi he seems to have problems with his eyes too
        take care sending u and oscar all my best wishes

        Sally Eubanks <sallyeu@...> wrote:
        Hello to the group--

        I thought I'd just say hello again and comment on what
        amazing information you've compiled here. I've gone
        and searched through some old messages and have a much
        clearer idea about how the diagnosis and treatments
        have gone for many of you. This has been really
        helpful! And that amazing Quest article was really
        helpful and I forwarded along the link to friends and
        family.

        I've gotten ahold of some of Oscar's medical records
        and understand his lack of diagnosis a bit better. It
        just makes me wonder why some people are able to get a
        result from an early muscle biopsy and others not.
        anyone know a reason for this?

        Based on what I've read, a serious problem in the eye
        area is a good indication of a centronuclear myopathy.
        it's the one reason i'm holding onto a personal
        diagnosis of MTM for my own son.

        We're still in the ICU, and i don't really know what
        to say about that. There are ups, and there are
        downs, and we're just trying to navigate them.

        By the way, Rachel and Nadine, I sent both of you
        personal emails. Did they not go through? You can
        email me at sallyeu@yahoo. com

        ____________ _________ _________ _________ _________ _________ _
        Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out.
        http://answers. yahoo.com/ dir/?link= list&sid= 396545469


        Yahoo! Answers - Get better answers from someone who knows. Try it now.

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