Results 1 to 4 of 4

Thread: My path to diagnosis

  1. #1
    Forum Member
    Join Date
    May 2020
    Posts
    16

    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! 😊

  2. #2
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    739
    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,
    Barry
    I’m going to do this even if it kills me!

  3. #3
    Forum Member
    Join Date
    May 2020
    Posts
    16
    Thanks Barry I am still working on the whole hope thing but who really knows?

  4. #4
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,570
    Quote 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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •