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My path to diagnosis

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    My path to diagnosis

    Back in January I went to my GP to ask about my voice changing, he said it might be either Cancer or MND. He sent me first to an ENT where a nice man stuck a camera down my throat. This showed my voice box half dead along with the back of my tounge. They said MND. Next a neurologist, after having a full head MRI and he was sure it was MND. Next was the dubious procedure of sticking knitting needles in my throat and cheek as well as every where else.Then another neurologist ,who after a full examination, diagnosed Bulbar onset. Is five months a good time? I have no idea but judging by the weight lifted any time is worth the wait. Stay Strong and Stay Safe, if you want to! 😊
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Hi Matthew and welcome.

    I hope to offer you a positive message. My symptoms began with speech variations 8 years ago and I was told bulbar onset MND. Later on I was informed that I have the subset form called PLS which whilst a slow form of the disease it is relentless.

    There are no examples of comparison as the disease affects everyone in a different way or rate of progression but technology has advanced so much in the past 10 years that the loss of speech can be overcome with the right equipment. I would recommend you investigate voice banking and the MNDA publish a guide on this.

    Best wishes,
    I’m going to do this even if it kills me!


      Thanks Barry I am still working on the whole hope thing but who really knows?
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Originally posted by matthew55 View Post
        Is five months a good time?
        The length of time to get a diagnosis varies widely Matthew, as there are several contributing factors to the whole process, such as symptoms, waiting times for consultant and diagnostic tests, the rate of progression, inpatient or outpatient and the Neurologist, to name but a few.

        Bulbar onset MNDs can be relatively easier to diagnose than limb onsets because there are fewer alternative causes/mimics to consider.

        So, 5 months to diagnose a person is subjective: for a fast progression, it’s not great if during that period they’re put at risk due to, for example, aspiration. For other people, it is not an issue if their diagnosis takes 5 months. Many people take more time, particularly if theirs is a slower form.

        Welcome to the variable world of MND

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.