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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. πŸ‘

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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. πŸ‘
                    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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                          #27
                          Hi everyone,
                          I have been referred for emg test tommorow at Birmingham qe,not looking forward to.it ,neurologist referred me ,due to on going symptoms, can anyone kindly tell me what to expect.

                          Many thanks
                          Craig Edmunds

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                            #28
                            https://www.uhb.nhs.uk/Downloads/pdf...ionStudies.pdf
                            ​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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                              #29
                              Many thanks ellie your an angel

                              God bless

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                                #30
                                Originally posted by Cae1977 View Post
                                Hi everyone,
                                I have been referred for emg test tommorow at Birmingham qe,not looking forward to.it ,neurologist referred me ,due to on going symptoms, can anyone kindly tell me what to expect.

                                Many thanks
                                Craig Edmunds
                                I've had EMG and nerve-conduction tests three times in the last year. It's unpleasant but nothing to worry about. Not as bad as the hygienist.
                                Each day is made easier with a bit of humour.

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