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Thread: So here's my story.. and how I may have triggered MND.

  1. #1
    Forum Member
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    Jul 2019

    So here's my story.. and how I may have triggered MND.

    Last edited by Michael John; 31st August 2019 at 02:40.

  2. #2
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Michael. You have had a horrid few months. What you've described doesn't match with anything that I've experienced or read about MND, but it's a complicated disease so I, not a specialist couldn't rule it either in or out. The gym would potentially knock us out if overdone. But it would do likewise for a range of diseases. I hope that your appointment on Thursday brings some clarity about what's been going on in your tired body. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Michael and welcome to the forum;

    I have never heard of :-

    "Unable to move or think, I felt liquid pumping down the back of my neck at the base of the skull down about 10cm. It pumped about 6-7 times, then stopped. it wasn't flowing down, it was being pumped out."

    Was liquid actually coming out and if so what colour etc?

    Have you had a MIR of the brain and base of skull?

    Have you had a lumber puncture and spinal fluid test?

    Certainly so of your symptoms are similar to those of Mnd but I think that it might be something else.

    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.

  4. #4
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Quote Originally Posted by Michael John View Post

    I've had the following tests all done twice now including full blood tests, physical tests, EMG and Nerve conduction. The results from all tests were perfectly normal.
    Michael, that is the only relevant information you posted.

    People with MND do NOT have normal physical exams nor EMGs.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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