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Potential Diagnosis for elderly father (89)

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  • John_1971
    replied
    Hi Ellie -bless your heart.

    He did indeed have an mri, the result of which showed damage to the top middle and bottom of his spine- he was a hard worker all right.

    He always used to sleep on a thin mattress underlain by an old wooden door to make it hard as possible. That generation were teak tough.

    I am just happy he is still here, it’s a blessing, even if he does not really want to be.

    We’ve learned a lot about MND along the way - will be supporting initiatives for research into treatments and reliefs for the rest of my life.

    x

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  • Ellie
    replied
    John_1971 Thanks for the update John, albeit bitter-sweet for your father who, btw, sounds like a true gentleman.

    Did he not have an MRI of his spine during the diagnosis process?

    Wishing you both all the best.

    Love Ellie xx

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  • John_1971
    replied
    Hi all. Just for completeness I am posting the outcome.

    The EMG was inconclusive and the neurologist felt she did not have enough confidence to diagnose MND.

    The slow onset and progression of bulbar and lower limb symptoms added doubt.

    My fathers spine is badly damaged from his work as a bricklayer and manual labourer. At his age there is so much that can be attributed to wear and tear it is clearly hard to attribute the symptoms with disease. Perhaps this sort of damage replicates the symptoms of this horrible disease over time.

    He can go for an EMG again later this year but had so many tests he is unwilling to take anything further any time soon- he found the EMG particularly uncomfortable and upsetting.

    The downside is the community support they have benefitted from will be wound down but he is comfortable enough and that service gets reinvested elsewhere in the community.

    All good wishes to you all and thanks for your thoughts and advice.

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  • RP0521
    replied
    Good evening

    I skipped the endless lengthy responses to the original post, (my positive thoughts and support are with you amily and friends).

    I agree with others that regular EMG testing is key to the possible early diagnosis of MND and that the possibility of being diagnosed with MND should be allowed to be taken on board as early as possible.

    Wishing you and family well.

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  • John_1971
    replied
    Originally posted by Ellie View Post
    In the overall diagnostic evaluation John, the presence or absence of fasciculations is almost irrelevant - the EMG is looking at how a muscle responds to stimulation and, even during the testing itself, it doesn't matter if your dad has zero fascics. xx
    Yes indeed professor 😊. That is pretty much what the neurologist would have said if only she had been so politely eloquent. She just said ‘the EMG will show me”…

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  • Ellie
    replied
    Originally posted by John_1971 View Post
    What was really interesting was that his tongue fasciculations were not on display today.
    In the overall diagnostic evaluation John, the presence or absence of fasciculations is almost irrelevant - the EMG is looking at how a muscle responds to stimulation and, even during the testing itself, it doesn't matter if your dad has zero fascics. xx

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  • John_1971
    replied
    Good evening all.

    So we got Dad in front of a neurologist this morning. Onward referrals now to SALT, a headscan, an EMG and he has had today’s obligatory blood test.

    ( to recap Dad is 89, his legs have now stopped working and he has deteriorating bulbar signs in his speech- his arms and hands still work).

    What was really interesting was that his tongue fasciculations were not on display today. But obviously she respected previous attendant’s observations of them to refer him on for an EMG.

    So whilst we wait on those tests and a final review I’d like to say I’ve learned a lot from the association and much more from the forum. Even if my Dad has not got ALS/MND we are another family aware of the impact of the disease and will be doing what I can going forward to support research, care and understanding.

    I’ll be back with final diagnosis at an unknown date- I reckon about July, we could draw lots!

    In the meantime best wishes to you and on behalf of my Dad and family thanks for your help and advice.



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  • John_1971
    replied
    Originally posted by Ellie View Post
    Not really John - they can 'strongly suspect' an MND etc. but, because it's such a difficult and serious diagnosis to make and to get, so the full diagnosis isn't made without testing. xx
    Ok - thanks.

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  • Ellie
    replied
    Originally posted by John_1971 View Post
    Even a provisional diagnosis of MND will be a big step forward. Could a GP do that ?
    Not really John - they can 'strongly suspect' an MND etc. but, because it's such a difficult and serious diagnosis to make and to get, so the full diagnosis isn't made without testing. xx

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  • John_1971
    replied
    Originally posted by Ellie View Post
    Do you know who decided to change your father's appointment - it had to have been a clinical decision.

    Hopefully there is a new plan in place now but frustrating is probably an understatement to describe your dad's (and your) mindset... xx
    Thank you Ellie. X

    We will not give up his need for a diagnosis.

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  • John_1971
    replied
    Originally posted by shelly21 View Post
    Oh John that is awful. Then he should be fast tracked meaning seen within 2 weeks. Did the g.p refer? It certainly does dominate our lives for sure.
    Ah - I guess the nitty gritty is what triggers the fast track Shelly? I had the words “Motor Neurone disease” whispered in my ear at A&E. We just have clinical descriptions of symptoms bouncing around, even the exasperated report by the stroke specialist did not refer to any specific disease.

    Even a provisional diagnosis of MND will be a big step forward. Could a GP do that ?

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  • John_1971
    replied
    We don’t know who made the call to palm it off - let’s be honest, it was very likely to have been the neurologist. Anyway, my Dad and Mum and Sister turned up at the appointed time, opened the door and it was… someone else.

    The GP was livid. Dad is now under the senior partner who actually came and saw him (that says a lot right) at home and was at pains to express her dismay.

    The stroke specialist on the day was also keen to make the case for him to see a neurologist writing a report pointing out his issues.

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  • Ellie
    replied
    Originally posted by John_1971 View Post
    A complete waste of everyone’s time and the GP is furious.
    Do you know who decided to change your father's appointment - it had to have been a clinical decision.

    Hopefully there is a new plan in place now but frustrating is probably an understatement to describe your dad's (and your) mindset... xx

    Leave a comment:


  • shelly21
    replied
    Oh John that is awful. Then he should be fast tracked meaning seen within 2 weeks. Did the g.p refer? It certainly does dominate our lives for sure.

    Leave a comment:


  • John_1971
    replied
    Unfortunately the NHS bounced my Dad so that he arrived for his appointment a few weeks back only to be told he was seeing a stroke specialist instead of the neurologist. A complete waste of everyone’s time and the GP is furious.

    Poor old Dad. He really would like to know the root cause of his ailments - it is incredibly frustrating for him and dominates his thoughts and conversations.

    Leave a comment:

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