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    #31
    Good afternoon Emma,

    If I may put in my own two pennies worth I noted in an early post you said "its just frustrating apart from the MRI's and the neurosurgeon tapping and bending his legs and hands like he was playing the fiddle"

    My guess is this what my own neurologist does by working me over with a reflex hammer and checking for spasticity - in other words - bits of me that are showing muscle weakness.

    Because he is an Motor Neurone Disease Association funded researcher who does clinics now and again he knows his MND well and can tell the difference between the reflexes of somebody with normal responses and those with MND.

    I believe, although I'm not sure, but reflexes are faster when the motor neurones are decaying because it seems like motor neurones get excited before they die

    Maybe somebody else he will be along to either back me up or correct me in due course.

    In the meantime can I just add it took me 18 months to find out what was wrong with me and to say that was frustrating is not correct because until I did know I had no real idea what I was heading for as the things that were suspected were either reversible or treatable.

    Once I did know, real dread set in.

    Can I wish you well in this difficult time?

    I'm sure you will find this forum very helpful.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

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      #32
      Hello Andy,

      Thank you for your interesting post about the testing of reflexes.

      In my experience, sometimes neurologists (and other medics) get on with carrying out tests on someone without explaining what they are going to do and why they are doing it - this can often leave the patient and bit bemused about what is going on. I suppose that the lack of explanation is due to strict time limits for each NHS appointment.

      I understand that 'abnormal' reflexes can be an indication many possible medical conditions, and not just MND. Though it sounds like your neurologistist is expert and experienced enough to know what changes in reflexes specifically relate to MND.

      I hope you have a lovely weekend,

      Best wishes,
      Kayleigh x
      Last edited by Kayleigh; 18 January 2019, 20:18.

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        #33
        thank you kayleigh
        love
        emma x

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          #34
          hi everyone
          latest update
          paddy bloods came back fine from GP
          brain/head scan also fine
          the GP also has requested a OT, and has given him a course of baclofen (can anyone offer any advice on this drug)
          hes back at salford royal tonight
          for re-doing cervical and thoracic MRI
          love
          emma x

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            #35
            Hi Emma,

            I don't know much about Baclofen, but I understand from reading posts on this forum that it is sometimes prescribed for spasticity. Ellie provided some information for Catsparkle recently in this thread (Ellie's post, dated 6 Jan 2019):-

            http://forum.mndassociation.org/show...light=Baclofen

            I hope all goes well with the scans this evening.

            Love and best wishes,
            Kayleigh x
            Last edited by Kayleigh; 4 February 2019, 18:43.

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              #36
              Hi Emma,

              I take baclofen and it is very much a case of finding the right dosage for each patient. Mine is 10mg recently increased from 5mg. Some people take more but if the dosage prescribed is not helping then go back to the GP.

              Best wishes,
              Barry
              I’m going to do this even if it kills me!

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                #37
                Hi Emma,

                I've been thinking about you and your family, and hoping that you are all managing ok.

                I hope Paddy is getting any support he needs from his GP etc.

                Love,
                Kayleigh x

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