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    #16
    Thanks!

    Originally posted by Ellie View Post
    You'd know if you'd had an EMG as it involves sticking needles into your muscles!
    Yes I've had that

    Originally posted by Ellie View Post
    NCS stands for Nerve Conduction Studies
    Not sure how EMG and NCS differ?

    Best

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

    Comment


      #17
      In simple terms: NCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus.

      If you want a more scientific and technical explanation, I'm sure I've an article on it somewhere, let me know.

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

      Comment


        #18
        Hi Ellie

        Originally posted by Ellie View Post
        INCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus
        Ah! OK - I presume the bods I've been seeing can differentiate a nerve problem from a muscle one - otherwise the suggestion would be errr multiple sclerosis and not motor neurone disease?
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

        "Things turn out the best for people who make the best of the way things turn out"

        Comment


          #19
          To add I'm now on Riluzole - see other post

          Also interesting to see post on link with fitness - I used to be very fit - first category cycle racing licence and many miles a month - resting pulse rate 40 or less etc. etc. - lots of high mountain cycle touring - I still do 100miles per week doddling around work etc. given I can hold one type of handlebars but not others - have now amended my fast bike to suit my hand disability

          I think I need to keep going with my history – I’m not very good about controlling weight with diet.

          My doc at Kings was diffident about my question about carrying on with gym etc. - obviously muscles with no nerve feed do not work but the others still need working and he said carry on as normal - and my normal is a bit unusual for my age.

          Tying this in to a vague understanding that MDN damage is caused by some type of over excitation – so perhaps “over using” yourself physically has implications?
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

          "Things turn out the best for people who make the best of the way things turn out"

          Comment


            #20
            It is quite common in people that do a lot of exercise.

            Terry
            TB once said that "The forum is still the best source for friendship and information."

            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

            Comment


              #21
              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.

              Comment


                #22
                Thanks both - interesting
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                "Things turn out the best for people who make the best of the way things turn out"

                Comment


                  #23
                  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
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #24
                    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.........

                    Comment


                      #25
                      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
                      I’m going to do this even if it kills me!

                      Comment


                        #26
                        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

                        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
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #27
                          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 Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #28
                            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
                            I’m going to do this even if it kills me!

                            Comment


                              #29
                              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
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                              "Things turn out the best for people who make the best of the way things turn out"

                              Comment


                                #30
                                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
                                Warmly


                                Andy

                                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                                "Things turn out the best for people who make the best of the way things turn out"

                                Comment

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