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Thread: Hello

  1. #1

    Hello

    Hi I have joined before I know for sure if I have MND or not. I started having fasciculations and small cramps in my Rt. tricep 4 years ago from there they have spread up and down now they make my thumb twitch. They are also in my Lt. arm making way down from tricep around my abdomen and ribcage and also now in both legs, I have very painful feet made worse by thick soled shoes.

    My grandmother was around my age when she was diagnosed MND and I think My Mother her daughter may have a varient as she has lost more than 60% of the muscle mass from her legs and has symptoms which match the dementia type aspects of the disease.

    If I do get diagnosed I plan to cash in my pension buy a camper take my younger children out of school and tracell the world with them before I lose the physical function to do so.

  2. #2
    Forum Member TIANDB's Avatar
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    Hi b_n.
    4 Years is a long time with no diagnosis and now general twitchings. Are you in the system with hospital checks and such. Be sure to highlight your grandmothers case and maybe your Mothers as this will contribute to any possible diagnosis. Also was your mother or grandmother gene tested ? I have the C9orF72 gene defect and I do know that gene is also associated with Front temporal dementia.
    How old was your grandmother when diagnosed ? I presume if your symptoms are similar she was a slow progressor . There are lots of other not so serious conditions that can make you twitchy. I wish you well and hope for the best.. Take care. TIANDB

  3. #3
    Thanks for response. I never knew my Grandmother sje died in her 50s approx 8 yrs from diagnosis. She apparently was diagnosed after problems with pegs and falling. I have had one unexplained fall, and intermittent issues one day I can squeeze shampoo from a bottle and turn door knobs other days I can't. My tolerance for walking has fallen from over 12miles comfortable and fast to less than 5 miles slow and feeling like I ran a marathon after. 5years ago I walked up the hill to the top of the cliff at West Bay with ease, 2 years ago I had trouble walking up the hill on the Lynton to Lynmouth walk (at the time I put it down to being a bit unfit). And my Rt hand looks more skeletal than my Lt.

  4. #4
    Forum Member Terry's Avatar
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    Hi Broken nails and welcome to the forum;

    Sorry that you find yourself here but it sounds as if you have a very very slow variant of Mnd if it is Mnd.

    Guess by the way you're talking that your Mum is still alive.

    I would be tempted to not overdo any exercise but do keep moving and doing things.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Forum Member TIANDB's Avatar
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    Hi again B_N
    Get yourself examined and if possible for a Neurologist input. While you are active still after five years of symptoms it may not even be MND ?
    Your gran sounds as Terry said very slow progression so that is a positive if there is one. Read a few of the introductions to see if any symptoms are similar, I wish you the best luck on your journey and hope it is a long healthy one. Take care.. TIANDB

  6. #6
    Hi yes Mum is still very much alive with symptoms of some kind of demetia and marked muscle wasting in the last 6mths. Her Mum was diagnosed when mine was 15 and died when she was 22. So her Mum was a bit younger than me at diagnosis. Mum is in her 70s now but the dementia has been there sporadically worsening for the last 20 years.

    My GP has ruled out all causes from blood tests I am booked to see neurologist mid sept. I have a job which requires me to be both active and strong, it is getting harder to do. I should also stress the twitch in my rt arm was just that for most of the last 4 years it is only with in the last 3mths the twitching has spread so alarmingly. And I am absolutely convinced the pain in my feet is associated with the twitching in my legs

  7. #7
    Forum Member Lynne K's Avatar
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    Good luck G'B', Lynne

  8. #8
    So today I was woken by cramp in my rt bicep rt quad and lt calf that was almost 12 hours ago and the cramp is still there. I take it that this is like mnd

  9. #9
    Forum Member Terry's Avatar
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    Hi B N,

    I think that cramps in biceps and to a certain amount, quads are not so common. And normally they can be very bad for a while but normally recover OK. My calf cramps would manly occur under the just under the muscle to above the ankle.

    Love Terry

  10. #10
    Hi BN

    I often wake up with cramps in my calves and toes, but they tend to go away quite quickly once I start moving around.

    Doug

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