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  • DeeH
    replied
    Husband was having vague symptoms for about 2 years then in January this year, finally got him to the GP. Thought arthritis at first. But after a few false starts at Rhematology seen by Neurologist in July after muscle conduction test, firm diagnosis of MND. 7 months.


    I believe it is Fail Arm type. But I have read a number of people on Facebook being told in other countries "We are 99% MND but we will wait and see". So glad this is not happening as standard here in UK.

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  • denise
    replied
    Oh sue. I really don't know what to say. Big hug from me. 🤗

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  • Suefromwakey
    replied
    This is interesting - I've questioned, with myself, the 5,000 at any one time number, since I have been coming on here its obvious people are being diagnosed or NOT all the time, its now 4 years this month since my husband had his first fall, and like others didn't trot to the Drs for quite some time - only when I said he had drop foot - he didn't even realise it himself, so that took 2 years I guess - then what with administrative errors (many) the virus etc he has only seen a consultant 3 times, although he has had many many tests - the first bloke said "Expect a diagnosis of MND" that was April 2019, he sees another consultant next week on which I am going to insist the promised 2nd opinion happens......and soon.....time is now running out as I can hardly get him into the car,

    What is alarming to me is that if, this, by some such miracle, proves not to be MND maybe he could have had some sort of treatment but I fear now this has been left too long,

    So I am guessing there's others out there just like my husband that has no defo diagnosis and appears in no stats whatsoever, but meanwhile has practically lost the ability to walk

    Sue

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  • Ellie
    replied
    Originally posted by Shaun View Post
    whats the saying , lies, damn lies and statistics
    Absolutely correct, Shaun - stats can be interpreted in various ways but, bottom line is, they interpret given data and, if not given data, cannot produce the full picture.

    How many people are walking around blissfully unaware they have cancer, diabetes or Covid? Until people are diagnosed, they are not counted, so any prevalance or incidence figure for any illness is a snapshot for a specific time period.

    We do know that MNDs are becoming more prevalent in the Western World, mostly due to living longer, increased awareness and knowledge of MNDs and better detection methods.



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  • Lynne K
    replied
    About 3 years before I went to my GP. I always tried to manage any health issues myself before going to the doctors. But I was getting worried that it could be serious for over a year. I let my dismissive other half influence me for a long time but it was plainly something to check out so eventually I went to my GP.. My first neurologist discharged me after ordering a spinal MRI, then another year before a definite diagnosis. So 4 years pre-diagnosis. Lynne

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  • denise
    replied
    I am sure Stephen was experiencing symptoms long before diagnosis. How many of us put off going to the doctor because of embarrassment. Then we end up with a list of symptoms which cause more embarrassment. Then we have 10 minutes with GP before we even get started. I had to drag Stephen to GP then the hospital. A lot of us are typically British and don't want to make a fuss. Then we have problems being heard. 🤔

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  • Shaun
    replied
    Originally posted by Ellie View Post
    Yes DeeH

    MND is not very prevalent because of its short life expectancy, irrespective of how long diagnosis takes. I would have some issue about the percentage of MND people having a long and difficult diagnostic pathway - certainly for the vast majority of classic bulbar and spinal onset ALS cases, diagnosis is relatively straightforward, or as straightforward as it can be to diagnose a condition

    Take care.
    Love Ellie.
    Hi
    just to chuck into the mix, many of us may have had symptoms long before diagnosis, for me it took nearly 3 years to raise problems with GP, so it could be its more prevalent than we think, us slow burners could be skewing the numbers.
    Diagnosed within 5 months ( only 4 appointments ) a month between each department, bish bash bosh, done deal

    whats the saying , lies, damn lies and statistics
    s

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  • Ellie
    replied
    Yes DeeH Prevalence of a disease refers to the proportion of people with a condition at a particular time: prevalance of MND in the UK is ~8.5 per 100,000 persons. And yes, you're right, the number hovers around the 5,000 because it's almost a 'one in, one out' scenario...

    MND is not very prevalent because of its short life expectancy, irrespective of how long diagnosis takes. I would have some issue about the percentage of MND people having a long and difficult diagnostic pathway - certainly for the vast majority of classic bulbar and spinal onset ALS cases, diagnosis is relatively straightforward, or as straightforward as it can be to diagnose a condition (syndrome) for which there are no biomarkers and is given after ruling out other mimic possibilities.

    If you have atypical presentation, PLS, PMA, flail arm, isolated and/or slow progression, the diagnostic criteria for ALS is not met, hence the wait and see approach. And, human nature being what it is, these are the cases we hear about, rather than the boring run-of-the-mill cases. Of course the Neurologist's competencies play a part too.

    Take care.
    Love Ellie.

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  • DeeH
    replied
    Onein300

    Thanks for that, the whole rare thing was/is pissing me off. Also the number of people who are told it is 99% chance it is MND BUT we the professionals will wait and see. Leaving people and their families in limbo. Husband was "lucky" that the consultant was quick and firm about his diagnosis.

    I posted somewhere else that Michael J Fox's new book, is in the papers. They stated that the chances of getting Parkinson's is 1 in 500 and currently 120,000 people are living with it in the UK.

    So does that mean that MND is more prevalent but the amount if people with it is a rolling 5,000 because many are diagnosed so late and sadly some pass away quickly.

    Just trying to clarify information for when I am explaining things to interested people.

    Cheers

    Donna

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  • denise
    replied
    We all do that.

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  • matthew55
    replied
    And we die alone 😞

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  • Onein300
    replied
    Originally posted by Ellie View Post
    GaryM That's someone not knowing the (significant) difference between prevalence and lifetime risk 🙄

    Quite correct. The lifetime risk globally is between 1/300 and 1/400.

    The incidence is 2 to 7 in 100,000 globally and prevalence 7 to 10 in 100000, BUT no one should ever be using incidence or even prevalence statistics for awareness. They just shout rare which MND is not. No other disease uses incidence statistics.

    1/300 is horrendous when you consider what it means:

    200,000 of the current living population in the UK will die of MND! Some are only babies currently, but as sure as eggs are eggs they will develop unless we can find treatments.

    650,000 of USA population!

    and

    about 83,000 of current Australian population!

    Another way to get to the 1/300 figure (Ie validate it) is look at death certificates. In the UK - 1 in 250 death certs per year have MND on!!

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  • Ellie
    replied
    GaryM That's someone not knowing the (significant) difference between prevalence and lifetime risk 🙄

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  • GaryM
    replied
    According to the article, Australians only have a 1 in 10000 chance of being diagnosed with MND in their lifetime, whereas here it's 1 in 300. I think I'll move to Australia.

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  • Ellie
    replied
    nunhead_man Andy, like all announcements of a 'breakthough', it's in a petri dish, but very intersting nonetheless

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