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    #16
    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.



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

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      #17
      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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        #18
        Oh sue. I really don't know what to say. Big hug from me. 🤗

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          #19
          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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