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Blissful ignorance

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    Blissful ignorance

    Hi, I've never posted on a forum before and I'm not sure why I'm doing it now so I apologise in advance if I don't make much sense, I had to go to my gp in June because of some problems I had been having with my foot and arm and general weakness, had fallen loads of times and was struggling to even brush my hair, apart from those things I was otherwise fine, I am now going through a series of tests bloods, mri, nerve things etc, unfortunately over the last few months it has become obvious what is wrong but I don't want to know, i cant even say its name, but I cant escape it now, it's there when I look in the mirror and see what remains of my twitching mangled up shoulder, my stringy biceps that can barely hold up a mobile phone, my horrendous right foot that hurts when I walk and is becoming more and more twisted with toes that curl and claw at the ground, the constant stream of twitches which I used to find amusing until I was told why they were happening, they follow me all day and night, new ones appear in new areas every few weeks, the latest in my neck, I can feel a familiar fluttering and slight vibration inside my mouth but I dare not look, I don't want to know anymore, I know enough, I want to wind the clock back to June and cancel my doctors appointment, then I could have continued living in blissfull ignorance just for a wee while longer,

    #2
    So sorry this is happening to you; once diagnosed there will be lots of support for you from nurses, occupational therapists, physios and of course on this forum.

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      #3
      Lassie77 I remember those awful times. Its great you've finally posted on the forum. Have they spelt out the possibility its mnd?
      Diagnosed May 2021 bulbar onset als.

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        #4
        Your story sounds unfortunately very familiar, but as Jackie R says above - the only way to get some proper support is to see the diagnosis process through to the end, whatever that may be. Once an official diagnosis is made then appropriate support can start to be put in place.
        Feeling ill and not knowing why can be a frightening and lonely place, but you may be surprised at what support is made available to you once your condition is identified and you are "in the system".
        In the meantime, we will be here to offer a sympathetic ear and a supporting hug.
        Hi, I'm Eddie.
        Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
        Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
        Still wondering what the future will bring.

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          #5
          Originally posted by Lassie77 View Post
          I am now going through a series of tests bloods, mri, nerve things etc
          If you're still undergoing tests, presumably you don't have a confirmed diagnosis?
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            So sorry you’re going through this frightening and confusing period. I can understand why you don’t want to know/think about it but a diagnosis confirming one way or the other is surely better than being in limbo. I truly hope you don’t have MND but you will be supported if you do have it; as others have said, once you’re in ‘the system’, you can access MND support and maybe even get accepted on a research trial to find a cure (if you want).
            Fingers crossed 🤞 for you that your diagnosis is something else that can be treated xx
            Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

            Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

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              #7
              MND is a very rare disease. Please not do not try to assume the worst as there are many things that could be causing your symptoms.
              Foxes Never Quit 💙

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