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Worried about possible bulbar mnd

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    Worried about possible bulbar mnd

    Hi ,I'm a 43 year old Male, who's very active ,and have a young family,about 5 months ago I started getting muscle faciculation all over my body , so my gp booked me in to see a neurologist, the neurologist carried out a full physical examination checking for muscle weakness and atrophy, this was all good ,I also had full blood work carried out checking ck levels ,these came back clear, science then I've been haveing major issues swallowing food and liquids ,in still haveing muscle fasiculation all round the neck and face ,I'm worried that this could be the start of bulbar mnd .
    thanks for takeing time to read this.

    Craig Edmunds
    Westmidlands

    #2
    What's your voice like?

    Comment


      #3
      Hi Craig.

      What did GP say about your "major" swallowing issues? You could ask for an ENT referral as a next step and/or a swallow assessment.

      Good luck.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Hi , many thanks for replying, I have no slurring in my voice ,it dose feel strained sometimes ,but that might be down to me listening to my own voice ,I haven't spoke to gp ,as all they suggest is anxiety, never I had anxiety in my life ,I'm a ex soldier ,so I'm ugly enough to deal with most things that life throws at you , also tinnitus started about 3 months ago and sinuses started clicking about 6 weeks ago ,unable to sneeze, I've got no muscle weakness at all ,I'm just very worried at moment.

        Thanks again for replays
        God bless
        Craig

        Comment


          #5
          Presumably the Neurologist discharged you as your tests were normal.

          You need to follow up with your GP re your symptoms, obviously it's causing you a great deal of stress.

          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi ellie

            Neurologist was happy with physical examination
            And the bloods came back clear , I have emailed his receptionist this morning explaining my concerns,but dose bulbar mnd start this way or do you start slurring words thirst ,never been to doctors before all this started .

            Many thanks.

            Comment


              #7
              My neurologist was a professor micheal Douglas, he seemed on the ball when he checked us over ,I just dont want to waste nhs time and resources by haveing a emg and it comes back clear ,can you pay privately for these things ,at least I'm wasting my own money if I have one and it comes back clear.

              Comment


                #8
                Yes, EMGs are available privately, with a referral only I suspect.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Thanks ellie

                  i will try and get a referral.

                  All the best.

                  Comment


                    #10
                    Hi ,I've spoken to neurologist this morning who has advised that it is not mnd at all even without emg he said bfs ,swallowing problems are the same ,spoke to my gp this afternoon and they reckon gerd or globus ,but has emailed neurologist for his advise , I've had fasiculations all over face ,neck and lips today ,I feel like I'm going round in circles between gp and neurologist. Throat feels like its narrowed.

                    Comment


                      #11
                      Anxiety is exacerbating your twitching and making you hypervigilant, hence the vicious cycle.

                      If the GP thinks it's GERD, you should ask for a referral to an ENT/swallow assessment, as I suggested above.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Hi ellie
                        many thanks for reply,I will be doing that first thing this morning, I have the up most respect for you guys who are battling this cruel disease and I salute you all for takeing the time to respond to people like myself who am worried that we might have the symptoms of this disease.

                        Many thanks
                        God bless
                        Craig

                        Comment


                          #13
                          Hello Craig - Cae1977

                          Thank you for your respectful comments. I hope your concerns are answered and I hope you get to the bottom of this... if the Neurologist you saw is a specialist in MND and has said it is not MND you can rest assured...

                          I can fully understand your situation. The third Neurologist I saw was Dr Kenneth Dawson - MND specialist. I was so grateful to get off the not knowing what was wrong with me and get the diagnosis’s despite the awful news.

                          My1st privately paid neurologist in June 2019, was Dr Gareth Llewellyn. My blood tests and physical checks which were all clear he said I was suffering from anxiety but my symptoms progressed.

                          I needed to know what was happening and began my own searching in books, online, listening to friends and I went from one illness to another if the symptoms matched... which was worse... my symptoms matched lots of illnesses.

                          My 2nd neurologist in Dec 2019 wouldn’t say anything until I had an EMG (which was cancelled due to Covid) My symptoms got worse until finally I saw my 3rd Neurologist, Dr Dawson who confirmed diagnosis in June 2020.

                          I can understand that you need to know and can appreciate what you are going through.

                          I too, was in the Army... in 1982-89 - thinking of you... best wishes
                          I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

                          Comment


                            #14
                            Hi Jeanette

                            Many thanks for the kind words

                            I've got no physical weakness ,just the muscle fasiculation all over and swallowing issues, certain foods go down no problems and fluids are ok but with some foods it takes 6 attempts to swallow it all ,I'm still.waiting on docs to call back last time I spoke to them all I got was anxiety ,never had anxiety in my life ,served all over the world as a infantry soldier (2 rrf) certainly ain't going to get anxiety now at 43 years old ,I'm just going to have to screw my squaddie head back on and see what happens.

                            Thanks again

                            God bless.

                            Comment


                              #15
                              Craig, I hope that you get a definitive diagnosis soon so that you can start on the correct medications and get appropriate support. I and others got discharged by the first of the neurologists that we saw. In my case
                              my GP re-referred me (he looked annoyed that I’d been discharged). The second NHS neurologist organised a brain MRI and nerve and muscle conduction tests. These gave the appropriate results for my diagnosis (about a year from seeing my first neurologist to getting my diagnosis). Good luck, Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment

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