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Thread: Possible diagnosis

  1. #21
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    My Neuro said that a lot of European football midfielders get this condition. Its suspected that they run a lot and hence the exercise. i also used to be very active.

  2. #22
    Forum Member nunhead_man's Avatar
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    Thanks both - interesting

  3. #23
    Forum Member nunhead_man's Avatar
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    Hmmm - still poking around - see the mercury suggestions linked to teeth filings etc

    And wondering about life expectancy - seems I'm quite slow burn and understand this is asking how long is a piece of string but ....

    What is the range here?

    Best

    Andy

  4. #24
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    My husband was a footballer and a drummer to with a lot of fillings and I have read mercury and very active people is a possible link.........

  5. #25
    Forum Member Barry52's Avatar
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    Hi Andy,

    The professionals have been searching for a link for many years and there are too many variables. Likewise with using data about life span as MND affects us all in different ways. Shortly after my diagnosis 5 years ago I did a lot of research because like you I wanted answers and a cure. I soon realised that whilst I want to be appraised of the latest treatments I still have some personal goals so I turned my attention to these. As I slow down it becomes more difficult but despite the challenges of living with MND I enjoy life. I gave up pondering what ifs.

    If like me, in your words are "a slow burn" then I hope we get a cure or at least something better than riluzole.

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

  6. #26
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by Barry52 View Post
    Shortly after my diagnosis 5 years ago I did a lot of research because like you I wanted answers and a cure.
    Yeah - bit like this - http://www.businessballs.com/elisabe...s_of_grief.htm

    Quote Originally Posted by Barry52 View Post
    If like me, in your words are "a slow burn" then I hope we get a cure or at least something better than riluzole
    We will see re slow burn - if and when something else turns off to add to my left hand / arrm issues I'll have some indication

    And re riluzole do you have a references on effect / outcomes?

    Best

    Andy

  7. #27
    Forum Member Ellie's Avatar
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    Hi Andy,

    You need to split MNDs into sub-groups really, if talking about prognosis as there's a big difference in "expectations".

    PLS can have a near-normal life expectancy, if it stays as PLS. But at the other other end, Progressive Bulbar Palsy has a very short life expectancy. (Of course there are always exceptions)
    Then you have ALS - which can be limb or bulbar onset, each with different life expectancies - UMN dominant ALS, PMA, all with their own idiosyncrasies!

    I'm trying to say if people say "I'm 4yrs post diagnosis and climbed Snowdonia last week" or "my dad died after 11mos", it's best to know from where they started before comparing yourself to them. Otherwise it's apples and oranges.

    Ellie x.

    PS. Hope you continue with your slow progression!
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #28
    Forum Member Barry52's Avatar
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    Quote Originally Posted by nunhead_man View Post
    Yeah - bit like this - http://www.businessballs.com/elisabe...s_of_grief.htm



    We will see re slow burn - if and when something else turns off to add to my left hand / arrm issues I'll have some indication

    And re riluzole do you have a references on effect / outcomes?

    Best

    Andy
    Andy,

    The link you sent raises a number of issues about how we all deal with life when given a diagnosis of MND. EKR's 5 stages of grief are interesting and I can attest to feeling some of them after my initial diagnosis.

    I can't speak from personal experience about riluzole as I refused it when the medics said it is shown to extend life by 3 months but there are others on here who believe in the benefits and since I take some supplements which I believe help me who would want to stop medication unless it has an adverse effect.

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

  9. #29
    Forum Member nunhead_man's Avatar
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    Thanks Barry - best reference to riluzole is dear old Wikipedia - https://en.wikipedia.org/wiki/Riluzole

    This in turn takes me to http://onlinelibrary.wiley.com/doi/1...01447.pub3/pdf which goes back to 2012 and contains the three months extra claim and "emerging evidence that chronic glutamate excitotoxicity may accumulate to toxic levels and contribute to neuronal death in ALS provided a rational basis for undertaking a clinical trial with riluzole , a drug with complex effects, but which appears to block the presynaptic release of glutamate ( Rothstein 1996)"

    I have a thought about the three month average thing - someone with their head in a fridge and feet in an oven is on average comfortable. And another in that that deciding when whichever MDN variant you have actually started or gauging the current stage of it is not an exact science.

    Thinking on as ‘twere

  10. #30
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by Ellie View Post
    You need to split MNDs into sub-groups really, if talking about prognosis as there's a big difference in "expectations".................
    PS. Hope you continue with your slow progression!
    Sorry Ellie - had not responded to this - thanks

    Still struggling with acronyms so ......

    PLS = Primary Lateral Sclerosis - symptoms here may fit - https://en.wikipedia.org/wiki/Primary_lateral_sclerosis
    PBS = Progressive Bulbar Palsy - do not think I'm there
    ALS = Amyotrophic lateral sclerosis - https://en.wikipedia.org/wiki/ - seems to be what is suggested

    Then .....................

    UMN dominant ALS where UMN = upper motor neurone - found "a new amyotrophic lateral sclerosis (ALS) category named 'UMN-dominant ALS' and defined as 'due predominantly to UMN signs but with minor electromyogram (EMG) denervation or LMN signs on examination' has been proposed where LMN = lower motor neurones

    PMA = Progressive muscular atrophy

    And finally today's new word - Fasciculation - https://en.wikipedia.org/wiki/Fasciculation - which can be good - heart beats, tiredness after exercise and bad as a symptom of ALS/ UMN dominant ALS / PMA.

    So I have no idea if my off and on fasciculation in both biceps and left forearm is about tiredness after exercise of nerves burning out!

    And noproblems with shoulders, neck legs etc as yet.

    So I think I've got UMN dominant ALS with some PMA

    Seems to be slow burn but who knows.

    Best to all

    Andy

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