Myasthenia Gravis

Discussion in 'General Health & Wellness' started by OtherDJM, Sep 27, 2003.

  1. OtherDJM

    OtherDJM New Member

    I am newly diagnosed with Myasthenia Gravis and am looking for someone to let me know what I am in for. . .it has been two years since I started having trouble and it is now a struggle to get out of bed.
  2. doxygirl

    doxygirl New Member

    Hi there,
    Iam sooooooooo glad I found your post.
    I usually am on tthe fms board, because I have fms/cfids,
    BUT................... My sister has myasthenia gravis, and I want to tell you her story: Once upon a time LOL LOL,my sister fell down the stairs of her apartment complex, it was out of the clear blue for no apparent reason,( she was about 22 years old ) this started to become a series of events, she would fall all the time, couldn't get out of
    bed,couldn't open jars etc, etc; she was put in the hospital, and they ran all kinds of tests including a tinsilon test( I don't know if I spelled tinsilon right, it is the test they do for MG), she tested borderline positve for the tinsilon test, and yet they told her it was all in her head!!!!!!!!!!!!!!!!!!!!!!!!!!!!and sent her to a psychiatrist, for the next "7"years it progressively got worse, the psyciatrist had her on valium, anti depressants etc,nobody in our family knew what to do, for we were putting our trust in her psyciatrist! Thinking he knew what he was doing!
    WRONG! This progressed with my sister till she could not get out of bed,could not help herself off the toilet and to the point she couldn't hold her eyes open she had to prop her head back to be able to see!
    Finally, one day she developed an eye infection, she was absolutely petrified to go out of the house so my brother in law (her husband) literally had to carry her, to the eye Dr, and I'm glad for the MIRACLE of the "EYE DR",! after my sister lost over 17 yearsof her life he told her he was sure she had MG!
    They immediately put her into the hospital, and ran tests again, which resulted in her being put on mestinon, within a matter of hours she was like a new person, it truly was like a miracle was performed right in front of our eyes nobody could believe it!!!!!!!!!!!!!!
    this was about 13 years ago now that she was finally dx, she takes mestinon everyday, now holds down a full time job and is very happy!!!!!!!!!!!!!!!One little pill is all she needed!
    She is free!! she does have her limits and gets tired but that is nothingcompared to the life she had being miss dx'd and having those years taken away from her.
    Her and her husband never had children because of the miss dx, by the time she was dx'd she felt she was too old!
    They did sue the DR who miss dx'd her and after lawyers fee's, and DR bills they came out with very little $$$$$ but my sister said she didn't care aboutthe money , she just wanted the justice ofthe jury saying the dR was wrong, and she got just that!
    I'm telling you this because I don't ever want to see anybody struggle in anyway remotelyclose to what my sister did!
    I realize you said you were dx'd so thatis good at least you know what is wrong and you can pick up the pieces and go on from there doing just the best you can!
    The moral of my story is don't ever rely on one DR if you have any doubts, or complaints!
    If you have any more questions please feel free to put them under this post, and I'd be glad to help you any way I can!
    Hugs
    Doxygirl