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    #16
    Originally posted by Ellie View Post
    People cannot subjectively measure their own strength...

    Re Consultant Neurologist: just a suggestion Peter but, if you're paying for a private consultation, wouldn't it make more sense to travel further and see an MND Specialist? My feeling is if Dr P, an MS Specialist were to say "no ALS", you'd say, "well he cannot possibly know, he's just an MS Specialist" and, in your mind, the consultation will have achieved nothing.

    FWIW: stop "measuring the calf and testing strength regularly", it's classic anxiety behaviour and its only outcome will be to increase your anxiety levels = more twitching = more anxiety and so on.

    Be kind to yourself!
    Thank you Ellie you make a good point, I have shockingly had no response anyway from this specialists secretary so I'm going on the hunt again. Like you say it's worth travelling to find the right one!

    ​​​​​

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      #17
      Now found a MND specialist in Warrington Spire Hospital, Dr Sathasivam. Due to go in next Thursday.

      Just as well as NHS appointment turned up today and it's not till 25th July!!

      Have others with Bulbar onset found it tiring and painful after a while to smile, that's my main Bulbar symptom, swallowing still relatively fine and speach I can still shout and sing, maybe a little forced?

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        #18
        Originally posted by PeterDaviesNotts View Post
        Have others with Bulbar onset found it tiring and painful after a while to smile, that's my main Bulbar symptom
        That is NOT a bulbar symptom.
        ​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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          #19
          Originally posted by Ellie View Post

          That is NOT a bulbar symptom.
          That's odd, my face muscles even shake sometimes when I smile or make large facial expressions, have had facial cramping too.

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            #20
            PeterDaviesNotts It’s not odd Peter, you don’t have a diagnosis of MND. You might have any number of alternative conditions. Please take one step at a time
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #21
              Originally posted by PeterDaviesNotts View Post

              That's odd, my face muscles even shake sometimes when I smile or make large facial expressions, have had facial cramping too.
              It may very well be "odd" to you Peter but, no matter what you believe, it is NOT a bulbar/MND symptom.
              ​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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                #22
                Understood, thank you for your replies guys, it's hard to know what's going on at the moment, like you have said many times the Consultant will make things clearer

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                  #23
                  So annoying, tested positive for Covid last night just in time to make me miss my Consultant appointment today. Sods law! My legs although strong when worked out with farmers lunges and calf raises get such a tired and heavy feeling after using them for a bit just doing daily tasks. Also sitting still for a while it's like they take time to wake up and feel unreactive. However after sleeping and getting up they and the rest of my body is fine!

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                    #24
                    PeterDaviesNotts sorry you’ve got covid. Hope your not feeling too bad! Shame about appointment for today. Hope you’ve been able to rearrange. I’m from Warrington. The spire hospital is lovely. Wishing you a speedy recovery from covid.x

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                      #25
                      Originally posted by Piglet View Post
                      PeterDaviesNotts sorry you’ve got covid. Hope your not feeling too bad! Shame about appointment for today. Hope you’ve been able to rearrange. I’m from Warrington. The spire hospital is lovely. Wishing you a speedy recovery from covid.x
                      Thanks for your wishes, yeah it's not too bad at all so far. Went for the Spire as the Consultant is a MND and nerve specialist, bit of a distance but worth it I guess. Re arranged for 2 weeks time x

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                        #26
                        Well saw the Neurologist on Tuesday. He did what I thought was quite a quick exam and noted that I had atrophy in the left calf although he didn't state he found anything else including reflexes and clinical weakness. However I know that my left calf and foot is weaker than my right. He stated he is not concerned and would tell me if he was, stated he hadent seen this kind of presentation in 14 years. However he did order MRI of the back and leg and EMG. I do feel that with the constant fiblirration in the leg, the twitching, some cramping and loss of strength that it will be found, just it is early days. I'm probably in there before allot of others as I noticed the atrophy just from the knee accident. Anyway will keep you updated, I hope you all enjoy your bank holiday weekends x

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