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Thread: Working diagnosis

  1. #11
    Forum Member Barry52's Avatar
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    Welcome Vicky and Michael.

    I’m sorry to hear about your situation. I assume you are in the Uk and if so there are 21 MND care centres around the country where you could ask for a second opinion. Like others I have not heard of the description working diagnosis but with the slower forms of MND neurologists like to measure progression over time before ruling out ALS.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  2. #12
    Forum Member Ellie's Avatar
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    Hi Vicky,

    Sorry about your husband's half-diagnosis - even in 'mild' cases (I've never heard anyone being described as 'mild'; 'slow', yes or 'isolated', but 'mild' is new to me) the EMG test should give supporting data to rule ALS in or out, in conjunction with clinical exams. That said, it's heartening to hear his progression is so slow.

    It is quite unusual to be given a working diagnosis when there's damage to both upper & lower motor neurons. I'd seek clarification of the EMG results - in plain English, not Medicalese! - and, ask if not ALS/MND, what else can it be? What's been ruled out? What's still on the table?

    As been mentioned, if the diagnosis wasn't given at an MND Specialist Care Centre, ask for a referral to one.

    A man I know has a 'Working PLS' diagnosis, but he knows he has an MND. He has upper motor neuron involvement only for now, if he stays like that for another year, he'll have a PLS diagnosis (which may change again in the future)

    I wish the best for you, your husband & family all the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
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    Thanks everyone for your advice we’re at The Walton Centre, I’m not sure what is still on the table so will call the specialist nurse tomorrow because to be honest I got the impression nothing was left on the table, but as you say it would no longer be just a working diagnosis if that was the case. It’s all so confusing, I just hope and pray that it is slow progressing or something else.

  4. #14
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    I’ve been given a working diagnosis of MND, but after reading the NICE guidelines for diagnosis, think it might have been the specialist registrar overstepping the mark. There is nothing in my tests to counter indicate MND, but you’re supposed to be signposted towards services/ support team, given information about progression etc. I have a couple of tests still to come in.
    Vicky and Michael, best of luck, and I hope you and your husband is offered the help and support you need with his condition xx

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