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    Bulbar mnd

    Google morning mnd connect

    I'm looking for some advice and help

    I'm a 44 year old male , 12 months ago I started to get all over muscle fasiculation, and problems swallowing, my gp booked me in with private neurologist who carried out a full physical clinical test , he said nothing to worry about , I then paid for a private ncs/EMG TEST ,this was carried out on November 20th 2020 , this came back as normal apart from ulnar nerve dysfunction. The swallowing issues have carried on , so I paid for a private neurologist exam 4 weeks ago ,again this was normal, I then had a second emg test carried out , again ulnar nerve dysfunction was found and 4+ fasiculation in calf muscle , but everything else was normal and the neurologist has said no evidence of mnd , I have had a video barrium swallow test carried out 4 weeks ago ,I'm still waiting on results, I still have swallowing issues and muscle twitching, ....I've never been worried about my health as I've always been fit and healthy, but I am worried that I may have bulbar mnd .please help

    Craig

    #2
    Craig's 54 previous posts worrying if he has MND can be found here and here and here
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

    Comment


      #3
      Hi Craig

      I'm sorry that MND is still a concern for you. You've had lots of tests and have been advised several times that you do not have MND. You initially reported swallowing and speech difficulties nearly a year ago. Within a year it would be likely that someone with MND would by now have significant speech and swallowing problems. Bulbar Palsy tends to progress quite aggressively and after a year, someone with significant swallowing problems that you reported, would almost certainly be unable to eat by now and be requiring a feeding tube.

      You need to speak to your neurologist about your concerns.

      Best Wishes

      Rachel
      MND Connect Adviser

      MND Connect
      Contact us on 0808 802 6262 or at [email protected]

      Comment


        #4
        Professional mental health needed
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

        Comment


          #5
          I can tell you that I am in my second year and am completely mute, my tounge is practically dead and I am 100% tube fed. My arms are wasted and my right hand is almost useless.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #6
            All due respect , theres nothing wrong with my mental health , I'm just concerned at the moment as swallowing is gradually getting worse , and yes indeed I've had 2 separate emg/ncs carried out over a 9 month gap and 2 separate neurologist clinical test with nothing found , I've never been worried about my health until this started over 12 months ago , I'm just hoping the swallow tests results come back as something that is not mnd related.

            All the very best

            Craig

            Comment


              #7
              Good morning

              I've been to see ent consultant to day to discuss the results off my video barrium swallow test , all I got off him was there was no cancer ,but the one side off my throat muscle is not opening up correctly, hence the swallowing issues, he said I've never seen this before in 20 years of being a ent consultant, surely my 2 emg tests would of picked this up , so I'm no further forward in what's happening and still concerned about mnd, is there any further tests I.can.have or is the emg test the one to pick it up.

              Many thanks

              Craig

              Comment


                #8
                Hi mnd connect

                Any advice would be hugely appreciated
                I've had a full barrium swallow test , and results have come back
                Hypopharynx muscle is not opening on right hand side
                And piriform fossa muscle is not opening on right hand side , ent confirm it's not cancer , but I should go back to my neuro as it could be nerve issue ,here are my exact symptoms to date
                problems swallowing most foods ,fluids are going down but feel like they are comeing back up into nasal passage .
                All over muscle fasiculation particularly round neck area and face after swallowing
                cramping in calfs and left ankle.
                Swallowing issues and muscle fasiculation started september 2021.

                Here are my neuro tests to date
                October 2020 full neuro clinical exam
                All normal

                November 2020
                emg /ncs all normal barring ulnar nerve dysfunction in both arms.
                emg test normal.

                August 2021 second opinion with different neurologist.
                Clinical exam normal

                August 2021 second emg/ncs
                ulnar dysfunction
                Emg found 4Γ— fasiculation in both shin and calf muscles , asked dr about this he said possible bfs , no evidence off mnd. I was elated.

                Barrium swallow test
                August 2021

                Results
                Hypopharynx muscle in throat
                Piroform fossa in throat not opening correctly
                No cancer found thankfully.
                ent adviced to go back to neuro to get 3rd opinion.
                I'm led to believe these muscles are bulbar muscles.
                my biggest worry is this is possible umn bulbar
                Would this off shown on emg results.

                I really do not know where to go next with this, as the swallowing is getting slowly worse, I have never had health worries in my life, but I feel I'm not getting to.bottom of what's going on .

                I have spoken to yourselfs a fair few time now ,my apologies, any advice is very much appreciated

                All ver best

                ​​​​​​​Craig

                Comment


                  #9
                  Since you seem determined to have what I have so why not have mine? πŸ˜‰πŸ˜πŸ˜˜πŸ˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    Hi Craig

                    I'm sorry that this is still a concern for you. As you mention, we have discussed your symptoms in detail many times. Your symptoms do not suggest bulbar onset MND. You need to speak to your neurologist about your concerns.

                    Best Wishes

                    Rachel
                    MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #11
                      Good morning Craig,
                      Whilst I sympathise with you having such anxiety nobody on this forum can diagnose what your health problem is.

                      Maybe your neurologist will look more in depth at your swallowing issues and come up with a treatment plan.Nobody on this site would know / suggest what further tests you now need as we aren’t qualified to.

                      Really think you need to keep going back to Neurologist or ENT specialist to suggest the next step.

                      You will increase your anxiety by reading posts on this site that don’t apply to your situation.
                      Really hope you can gain some peace in your mind soon as you sound tormented by the not knowing exactly what’s wrong and if its treatable.

                      Hope you get a worry free day..keep occupied .
                      Best wishes
                      Mary

                      Comment


                        #12
                        Mary you really are a nice person. I just don't have what you got! πŸ€—πŸ‘πŸ˜πŸ˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                        Comment


                          #13
                          Many thanks Mary and mathew

                          I totally understand what you are saying, I feel like I'm being passed from pillar to post between neuro and ent , all I want is a straight answer off someone ,I'm sorry if I've offended anyone , I'm just very worried 12 months on .

                          God bless

                          Craig

                          Comment


                            #14
                            It's cool but stop overthinking it πŸ‘πŸ˜πŸ€—πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              Cae1977 sorry you're having so much anxiety still....anxiety itself if prolonged is bound to effect your health. It's your health professionals you need to get back to until you feel satisfied with their conclusions.
                              I will add this I believe we all hold stress and tension in various parts of our bodies...for example many people feel it most in their throat. So it becomes a vicious circle....

                              Mindfulness can help manage these overwhelming thoughts. Speak to your GP.
                              Good luck. πŸ‘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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