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Just Diagnosed-So much to take in

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  • Hi Jeanette
    I have great trust with the neurologist,even with out emg test ,it just the swallowing is not improving and my speach seems to be slurring on certain words like crisps ,chips biscuits, do you thinck I should go down route of second opinion and pay private for emg ,or leave it a while, gp is saying anxiety, never had anxiety in my life.

    Many thanks
    God bless


      Craig, your primary worry now seems to be your swallow related issues so, if you're going to fork out for a private assessment, would it not be better spent on an ENT specialist?

      Originally posted by Cae1977 View Post
      I have great trust with the neurologist,even with out emg test
      I'm sorry to point out that you obviously don't, given that you want to proceed with the EMG. Pease don't get upset with this but, despite your protestations, you appear to be quite anxious, as your ongoing posts reflect.

      So, all things considered, give some thought as to what you want to do next and, importantly, if you do go for private tests, will you be able accept the results?

      I truly wish you all the best and hope you don't end up down a rabbit hole - life is tough, stressful and out of kilter for everyone right now, you don't need to add to that.

      Love Ellie.

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


      • Hi ellie
        I understand what you are saying,im trying to also get a ent appointment asap ,my local village doctors has just merged with another 4 village surgerys,so it's a bit of a nightmare getting a appointment as it is all over the phone consultanting, excuse my poor spelling , I'm sorry if I've upset you,I have the upmost respect for you guys who have this cruel disease and take time to reply and help with people like myself I thinck they may be presenting symptoms.

        Many thanks
        God bless


          Jeanette Pearce Hi- sorry for the late reply, we’ve been away for a few days.
          im not doing too bad thanks-been a crazy few weeks since diagnosis, appointments nearly every day.
          im getting a few side effects from the medication-mainly nausea and excessive saliva.
          my mnd nurse has told me to just stick with it, as side effects will subside over time.
          im feeling a little calmer now than I was the initial days after diagnosis-luckily family & friends have been amazing & supportive.
          I want to try & live as normal life as I can for now-but just taking it all one day at a time.
          how have you been keeping?


            Hi Mark, welcome to our forums. You have a good GP and Neurologist by the sound of it to have gotten your diagnosis so quickly. It is very scary in the beginning but we all come to terms with it one walker or another. Take care, Lynne
            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.


              Well done Mark
              Every time I cry I say they are happy tears and it helps lift me out from the sadness which caused me to cry. The smile turns into a giggle and I remember to feel grateful for everything good in my life
              Keep positive as much as you can
              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


              • Hi , I've been having muscle cramping and ankle weakness and problems swallowing and perceived slurred speach , I had extensive emg and nerve conduction test carried out at end of November 2020 all came back normal , do you thinck I should ask for second private emg test as the 1st was carried out nearly 8 months ago.

                All the best