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    Swallowing issues

    I'm not saying I'm not glad to be slow in my MND, but stuff seems to creep up on me rather than hitting me with a hammer.

    I have a strange tickle the back of my throat if I voice dictate too long or I clear my lungs of phlegm.

    Could this be the beginnings of swallowing problems?
    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"

    #2
    Hi Andy, by no means trivialising your new symptom, but could it be hay fever (in peak season)? I’ve been diagnosed 8 months with bulbar onset MND and recently had dreadful problems with tickling throat, coughing, spluttering on mucus etc. Wrecked my sleep and I assumed the worst had started. Started taking Piriteze (antihistamine) and miraculously all sudden, new symptoms stopped. Good luck
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    Comment


      #3
      Bulbar here as well and if not treated my throat closes and I am unable to breath. Kept under rcontrol with a clear nose, Baclofen, Ibuprofen and carbocisteine and for my nose I have been using a sea water spray but am going to try it steroid spay. We are all different but often share symptoms. 👩‍👩‍👧👍🧐xx

      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        I get what you're saying about slow progression Andy - it can be easier to recognise new symptoms if their progression is blindingly obvious and not a subtle aggregation of symtoms until it suddenly hits you.

        If it's not allergy or reflux related, it sounds like the nerves to the bulbar region are affected to some degree, weakening some muscles.
        ​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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          #5
          Good afternoon

          Thank you all – hayfever was a good call as I have suffered from this off and on over the years so I've been taking the recommended nostrum and perhaps because of that the feeling is gone away.

          Ellie – noted as ever your wise words and I do have some fasciculations in my stomach region and my shoulders are beginning to weaken, But if by bulbar symptoms you mean swallowing and breathing I seem to be very slow in developing those things.
          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


            #6
            🤞🤞 that it was indeed hayfever Andy and long may your bulbar region remain strong. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Good evening Ellie

              Originally posted by Ellie View Post
              🤞🤞 that it was indeed hayfever Andy and long may your bulbar region remain strong. xx
              Thank you – yes, I was having fun and games with the testing the Smart trial as there was nothing on the questionnaire I was being given which allowed the distinction between the fact that I use NIV for my sleep apnoea but do not seem to get out of breath when I don't use it, as occurred when I had my serious fright with painkillers and did not use it for a couple of nights until I got back to it.

              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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