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Mnd symptoms for 10 months

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    #61
    Dodie was a little fit pre diagnosis me thinks 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

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    • Hi shelly

      prof mike douglas has been highly professional and a absolute gentleman with me ,after I.had seen the 2 neuros and had the 2 normal emgs , I was over the moon , I had barrium swallow test after last emg , ent has thrown spanner back in the works , with this due to.the worsening swallowing problems , I have the up.most respect for yourselfs ,if I could get a cure then I would, I'm getting told one thing buy a consultant then a different thing from.another consultant. And being fit dose not mean you are excluded from disease and illness, I've had covid twice in 12 months 2nd time I 2as very I'll for 4 weeks ,but I'm on the mend now.

      All the very best

      God bless

      Craig

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        #63
        Originally posted by Cae1977 View Post
        I've had covid twice in 12 months 2nd time I 2as very I'll for 4 weeks
        Did anyone investigate whether coronavirus might be responsible for causing myopathy or nerve damage?

        ​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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          #64
          Not sure but there is a train of thought that it may have caused WW2 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


          • Fairplay matthew,

            ellie no.ones investigated that yet, to be honest with you ellie , I've tried to take comfort in what both neurologist have said ,and the results in both emgs which are normal, my ent consultant seems pretty clued up with symptoms of mnd ,he has ordered brain ,brain stem and neck mri , I'm doing this private as there is a 16 week waiting time on my local nhs group, I'm just keeping my fingers crossed, Ii thinck with all the worry I've got myself into a deep hole with worry over this , I've always been mentally robust ,but this has nocked me sideways a bit .

            All the very best .

            Craig

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              #66
              Well, it is not ALS, as you've been told, so that is a plausible avenue to explore.
              ​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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              • Thanks ellie

                I'm going to see what the mri results garner, covid has caused a lot off other complications with people , just want to get to bottom of this swallowing issues.

                Take care

                All the best

                Craig

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                  #68
                  I'm sounding like a stuck record however lots of us (me included) hold tension/anxiety in our throat....exacerbating swallow issues.
                  I do feel that mindfulness helps...quiets that internal chatter....Headspace is a good app to use...it's on Netflix tooπŸ˜‡
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  • Hi linda
                    thanks

                    My son races professional karts , so were raceing the weekend hopefully that'll take my mind off things.

                    All the best

                    Craig

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                      #70
                      Sounds like a planπŸ‘
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      • Morning
                        I saw ent consultant yesterday, still could not get straight answer out oh him , I've a 3rd emg booked on Tuesday and a consultantation with mnd neurologist at the mnd clinic in the comeing weeks , symptoms have worsened scince I had covid in September, still very worried about this even with the previous normal exams.

                        God bless

                        Craig

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                          #72
                          Good luck with your appointments Craig. I’ll watch for your update x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                          • Thanks for kind words lynne, I hope you are ok , hopefully these further tests will come back normal, the not knowing is the worst thing, proffesor mike Douglas doesn't thinck it is mnd , but has sent me to mnd neurologist to find out for certain. I'm saying my prayers and keeping my fingers crossed , I'd rather go back on patrol on the streets of east Belfast and get shot at and petrol bombed than carry on with with worry off this.

                            God bless

                            Craig

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                            • Hi lynne

                              I.had 3rd eng/ncs yesterday at little Aston hospital sutton coldfield by a dr noushad mytheen, all that was found was fasiculation on emg , with no other findings and ulnar nerve dysfunction, he said no signs of mnd as fasiculation on there own mean nothing, I have a appointment at mnd clinic at the Birmingham qe in 2 weeks , I hope this is the end off all this .

                              All the best

                              Craig

                              Comment


                                #75
                                Just hope you believe it this time Cae1977
                                ​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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