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Re: [Myotubular_Myopathy] MOTHER OF TWO

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  • kbrowland2@aol.com
    In a message dated 2/18/2003 3:09:36 PM Eastern Standard Time, ... Renee, I am sorry you have to go through this. From my standpoint, it s not a lot of fun as
    Message 1 of 4 , Feb 18, 2003
      In a message dated 2/18/2003 3:09:36 PM Eastern Standard Time, renee_b_88@... writes:


      If you could tell me what your symptoms are
      and generally how are you feeling. Are you working?


      Renee,

      I am sorry you have to go through this.  From my standpoint, it's not a lot of fun as I'm sure it's not for you.

      My symptoms are:  general weakness body-wide.  My neurologist said I am weaker in my upper body.  I have a very difficult time going up and down stairs and use a cane a lot for balance.  If I fall, I cannot get myself back up.  My eyes are also affected.  My eye doctor calls it "restricted gaze" meaning the muscles in my eyes will not allow my eyes to move too far in any one direction.  I am always very tired and if I overdo it, I will hurt so badly I can't stand it.

      I am working, but I went from 40 hours down to 32 around the time I got my diagnosis.  I also have two children, but they are foster, soon to be adopted, children.  My doctor is not thrilled about my taking on children, but they are a good distraction for me because it forces me not to dwell on my own limitations as much.

      What about you?  What kind of symptoms are you experiencing?

      Kathy
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