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Re: [Myotubular_Myopathy] MOTHER OF TWO

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  • Renee B.
    Wow it s nice to know that I am not alone in this. my doctor knows nothing about MTM other than what she reads in the medical books. I am not sure you are
    Message 1 of 4 , Feb 18, 2003
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      Wow it's nice to know that I am not alone in this. my
      doctor knows nothing about MTM other than what she
      reads in the medical books. I am not sure you are
      aware of the Joshua Frase foundation, you can find it
      on the Internet, as a matter of fact I have a phone
      number for this Foundation.

      Alison Frase
      124 Crossroad Lake Dr.
      Ponte Vedra Beach, FL
      32082

      Phone: 1-888-817-josh

      I called her once and she gave me some useful
      information about supplements. Unfortunately I am
      overweight. I have two kids and work full time. Yes ,
      losing weight is extremely difficult. my mother has it
      as well and she too is overweight. She has lost some
      weight. If you could tell me what your symptoms are
      and generally how are you feeling. Are you working?

      Well take care and hope to hear from you soon



      RENEE







      --- kbrowland2@... wrote:
      > In a message dated 2/16/2003 10:53:24 AM Eastern
      > Standard Time,
      > renee_b_88@... writes:
      >
      >
      > > was diagnosed a lil less than a yr. ago. I am
      > absolutly frustrated
      > > with my doctor's because they have no idea what
      > they are dealing
      > > with.
      >
      > I am so sorry about your son.
      >
      > You are the first adult I've seen in this email
      > group with MTM. I, too, was
      > diagnosed with this disease. Because both of my
      > parents are already
      > deceased, it is difficult to know where I got it
      > from.
      >
      > I have an excellent doctor in Northern Virginia, but
      > even he admits that he's
      > only seen 5 cases of MTM in 15 years of practice.
      >
      > I don't have any real suggestions for you other than
      > if you are not currently
      > overweight, stay that way!! I am seriously
      > overweight and that makes the
      > disease harder to cope with. It also makes losing
      > weight extremely difficult
      > because I can't really exercise.
      >
      > I would be happy to try to communicate with you and
      > share notes as much as
      > possible.
      >
      > Kathy
      >


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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 2 of 4 , Feb 18, 2003
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        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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