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  • June 23, 2011 at 9:46 am #73790
    hi im new to this just wanted to say hi

    hello my names abbey hemingway i am 20 years old and suffur from a muscular problem , iv had this problem since i was 3
    they havnt found out what my problem is because i seem to be the only 1 with this condition at the moment. im on going tests all the time :( which is a pain. i was woundering if i wrote on here some off the things i struggle with maybe someone on here may suffer the same as me . and i could get a bit more info myself

    they main things i struggle with are lifting things such as a full cup of coffee would be too heavy for me to lift with out the coffee going all over , i struggle with getting up and own stairs and walking distances, i take small breaks about every 150 meters as my muscles in my legs tighten and cause pain. i cant run jump or hop , i havnt got the strength to lift my own body weight which shoundnt be a struggle when am a size 8 lol. the main things are day to day things i struggle with such getting in bath , pulling jumpers off, cutting meats etc.

    i am very greatful that my family are around me most of the time to help me with my day to day struggles. i hope someone with the same problems could give me abit of advise .

    thank you

    abbeyhemingway
    Participant
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    Joined: 23/06/2011
    June 23, 2011 at 2:08 pm #80865
    Re: hi im new to this just wanted to say hi

    Hello Abbey and welcome.

    Have your Consultants ruled anything out? It does seem that your symptoms could fit into the MD/MS/MND [mine]fields. I know some medicos are reluctant to give definitive diagnoses as pinning down to a specific type of muscular condition can be very tricky, even with modern day genetic testing.

    I take it no one else in your family has experienced similar problems to a similar or lesser degree?

    I have FSH and although my first areas of difficulty were my arms, it was not until I started having problems with my legs that my condition really started to impinge on my life.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    June 23, 2011 at 3:43 pm #80866
    Re: hi im new to this just wanted to say hi

    Hi Abbey

    Like AM said it does sound something along the MD/MS/MND lines.

    I hope you get some answers soon :)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    June 23, 2011 at 4:45 pm #80867
    Re: hi im new to this just wanted to say hi

    hi Abbey.

    My nearest and latest diagnosis is Rigid Spine MD although they have always maintained that whatever MD I have is pecular only to me. was always a poorly floppy child and wasnt “Offically” diagnosed with having “something” till a temp teacher seen the sign of scoliosis about the age of 9ish and backed my mothers worries by writing to the School Doctor.

    Now 29 and only have been given a firmer title of Rigid Spine as testing tech and ablity has moved on.

    Hope you find some answers on talkMD, I certanly had a few laughs and some helpful tips.

    take care

    Cat

    Cat
    Moderator
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    Joined: 20/09/2010
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