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I'm new to this

Last post Sat, Apr 12 2008 11:19 AM by mjbees. 8 replies.

• mjbees1

  Posts: 3

  • I'm new to this
  • Posted: Thu, Apr 10 2008 6:22 PM

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  • Hi i'm mjbees nick name given to me from my bloke. I've never been in a chat forum before and suppose i'm just looking for strength in people like me. I have 2a LGMD and i'm 27 on the upside i've got a fab bloke and two perfect little girls. I don't know anyone with an illness like this and often feel isolated because of it. a problem shared is a problem halved so hello to anyone who's reading this.

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  Filed under: Limb-Girdle Muscular Dystrophy
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• Cudachaser

  Posts: 1,403

  • Re: I'm new to this
  • Posted: Thu, Apr 10 2008 6:43 PM

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  •  Hi Mjbees

    Welcome aboard! I have no idea what you have...get lost in the acynoms. I have neuropathy in my lower legs...but still manage to scuba dive!

    Joe 

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  • Joe
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• mjbees1

  Posts: 3

  • Re: I'm new to this
  • Posted: Thu, Apr 10 2008 6:58 PM

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  • that must be amazing! I have 2a lgmd. Was training to be a nurse but my illness stopped that training to be a counsellor now, I love it makes me feel better knowing i'm doing something with my life. not quite scubadiving tho lol. Where are you from?

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• Daisies

  Posts: 1,250

  • Re: I'm new to this
  • Posted: Thu, Apr 10 2008 7:28 PM

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  • Hello mjbees,

    welcome to Disaboom.

     

    Daisies

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• Wheelin Rev

  Posts: 830

  • Re: I'm new to this
  • Posted: Fri, Apr 11 2008 12:07 PM

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  • mjbees1,

     

    Welcome to Disaboom! I have MELAS which is also covered in the MDAs grants for research. Looking forward to seeing you around here.

     

    Dave

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  • My D.I.S.ABILITY is a Do It Sitting ABILITY ! ! ! ™
    
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    "While nobody is promising a bed of roses with any major incurable illness, associating with others that have a strong positive outlook on life is the the next closest thing to a cure. Attitude is everything." Quote by Wheelin Rev at Disaboom, August 2008
    
    
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• Vinny

  Posts: 371

  • Re: I'm new to this
  • Posted: Fri, Apr 11 2008 12:23 PM

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  • Hi mjbees

    Welcome to Disaboom

    Stay Strong

    Vinny

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• mjbees1

  Posts: 3

  • Re: I'm new to this
  • Posted: Fri, Apr 11 2008 4:43 PM

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    Hi everyone thanks for replying. I'm finally chilling out after a busy day with the kids. Should be doing my college assignment but dont want to be up to late been sore lately. Any ideas on good pain relief for muscles

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  Filed under: Limb-Girdle Muscular Dystrophy
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• DanTheMan

  Posts: 19

  • Re: I'm new to this
  • Posted: Fri, Apr 11 2008 5:18 PM

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  • Five years ago I was diagnosed with a non-specific form of LGMD and fully understand your feelings of isolation. I am surrounded by friends who care, but they have no "real" clue what I go through on a daily basis, and I hope and pray that they never fully understand it the way I do. Do you experience a great deal of fatigue?
    

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  • Once in awhile you get shown the light, in the strangest of places if you look at it right.
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• mjbees

  Posts: 2

  • Re: I'm new to this
  • Posted: Sat, Apr 12 2008 11:19 AM

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    yeah definately but two toddlers add to that lol i got my full diagnoses about two years ago, I'm 28 next month and have been seeing doctors now 4 18 years, they say it's hard to diagnose but once you've got the lgmd part i found i could match the sympons to 2a lgmd on line the full diagnoses was just confirmation really. It's nice to know im not alone... people keep telling me to go to america for a curelol dont think they realise there isn't one

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