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  • frustrated with undiagnosed disorder

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    Old 06-19-2010, 10:39 AM   #1
    1stxmom
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    Red face frustrated with undiagnosed disorder

    Hi, I am a 29 yr old female. I am one of three. My mom had us 2 1/2 months early. Of the 3 of us I am the one who had to stay in the hospital for about a month due to my lungs not being fully developed. I was considered a floppy baby. My mom said I was behind in motor skills compared to my siblings. I didn't learn how to walk until I was 2 1/2 yrs old. Everyone said I walked like a duck. I have never been able to run or climb stairs. I have a hard time rising from a sitting position. When I get in my car I have to pull my leg up to get it in the car. My eyelids are starting to droop. I feel like I can't think straight. I fall down all the time and I don't have good balance. When I was pregnant I went into labor early and so they had to use Magnesium to stop the contractions. The magnesium ended up temporarily paralyzing me until they could get it out of my system. I have been seeing a neurologist since I was 14 but he cant seem to get a diagnosis. I have been told it was several different disorders and then they would say no it isn't that. I am in the process of changing doctors because he doesn't seem interested in helping me find out what is wrong. I am always tired and short of breath. Does anyone experience the same symptoms? I really need advice. I am starting to get depressed because people say I'm just lazy and that I need to exercise. One of my last test indicated that my creatine levels were extremely high. The doctor told me not to exercise because I have more bad muscle than good ones and it would make them waste away faster. I have been doing a lot of research but I can't seem to find anything similar to me. Everything I read usually affects people late in life or at birth with a short life expectancy. I have had this since birth.

    Thanks
    Christy

     
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