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Worried about possible bulbar mnd

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    #16
    GP in January, diagnosis five months later. Bulbar onset. 😊

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      #17
      Hi Mathew
      really sorry to hear that , what normally comes first with bulbar mnd ,swallowing issues or speach issues , still got swallowing issues ,speach is normal ,sinuses are clicking all time and pressure behin the eyes with clicking ear drums, just waiting on a emg date neurologist has said this is not mnd ,but no one can say what is wrong.

      Mant thanks
      Craig

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        #18
        For me it's voice and tounge first with my hands coming in second. 😊

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          #19
          Hi Craig

          My first Neurology appointment was with a Neurologist who was not a specialist in MND but discussed my case with a MND Neurologist who advised Bulbar MND. Prior to this I saw an ENT consultant that scoped my vocal cords which he advised were weakened and bowed. My voice was the first symptom I experienced thus the ENT appointment. Swallowing problems appeared later. A further appointment with a MND Specialist confirmed Bulbar ALS. You will need to wait for all the test results to be complete before a Neurologist can make a definitive diagnosis.
          Hope the results are not MND and is something that is treatable.

          Kevin

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            #20
            Many thanks fellas

            Swallowing ain't been to bad today ,muscle twitching still the same,neurologist has said it's not mnd even without the emg test, maybe I should have faith in him as he is far more educated than me fingers crossed.

            Thanks for reply gents.
            All the very best
            Craig

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              #21
              If it helps at all Craig, the more anxious I get, the more I twitch. I'm having a feeding tube fitted on Monday hopefully and am quite anxious about the op and also the Covid risk, so this week I've been getting a lot of twitching. When I have no appointments and can forget about the illness, I don't hardly notice any twitching. It might still be there but if your mind is focused on it, it can seem a lot worse.
              Each day is made easier with a bit of humour.

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                #22
                The operation is a breeze. It's a bread and butter op. 👍

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                  #23
                  Thanks Gary

                  I've just got to have faith in my neurologist, see what happens with emg test even though he thinks I dont need it .

                  many thanks
                  god bless
                  Craig

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                    #24
                    Originally posted by matthew55 View Post
                    The operation is a breeze. It's a bread and butter op. 👍
                    Thanks Matthew. I know it's straightforward, doesn't stop me worrying though. I think it's more the fact that I've come to rely so much on my wife in the last few months, that it'll feel a bit strange relying on the nursing staff for help. That and the whole mask wearing hassle.
                    Each day is made easier with a bit of humour.

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                      #25
                      I got lucky and didn't have to wear one in my room. 😊

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                        #26
                        Hi ,just update
                        gp has given steroid based nasal spray and advised to take for 2 weeks, explained concerns about swallowing not improving, and neurologist is still adamant that I dont need a emg tesem.still concerned about bulbar mnd.

                        Many thanks.
                        Craig

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