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    Hello all

    Just a quick post to say hi & looking forward to getting to know my new MND family.

    Last week the Neurology Doc confirmed that I have a ‘working diagnosis’ of MND, limb onset.
    I noticed Fasciculation of my leg muscles May/June 2021. This has progressed a bit, Foot drop and weakness in my right leg, so I use a stick or two the last 6 weeks, due to a few iffy falls over the last 6 months, mostly on soft ground thankfully. Speech is a bit slurred when I’m tired or cold.

    I’ve had EMG/NCS & full back MRI. MRI was clear.

    Strangely I’m in a good place mentally as I figured out MND was quite likely back in October, so wasn’t a huge shock. Now just waiting on the 2nd opinion appointment with MND specialist.

    I don’t think I’m sticking my head in the sand, more just focusing on the now & planning a few fun things for this Spring & Summer. I do have some limited understanding of the huge rollercoaster ahead but till the dust/shite settles I’m just focusing on getting ready for the short term changes.

    I’m just really worried for my fiancé, this has understandably knocked her for 6. She is amazing & has been great support throughout.

    All a bit overwhelmed but focusing on enjoying the now, in between the low points.

    Not quite the quick hello, more of a brain dump, apologies!

    #2
    Welcome Fraxinus where there's life, there is hope. But don't worry should you get confirmation as you join the very best people on the Planet for help, advice and support as well as friendship and humour. So sorry to meet you but happy you're here. 👍🤝🤗😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Fraxinus welcomme, and no apologies needed. Take care xx
      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.

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        #4
        A warm welcome to you and to your fiancé - good to have a Latin scholar on board 😉

        Hopefully your appointment with the ALS Specialist is soon. Given your diagnosis isn't official, does that mean you haven't been assessed by an OT yet, or was it they who supplied the stick?

        Originally posted by Fraxinus View Post
        I’ve had EMG/NCS & full back MRI. MRI was clear.
        Does that mean that the EMG was abnormal? xx
        ​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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          #5
          Fraxinus hello x

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            #6
            Nil desperandum Fraxinus.

            Doug
            Diagnosed April 2017

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              #7
              Fraxinus hello and welcome to the forum. Not really the place any of us wanted to be but now we're here it's a good space.
              Great to be planning some fun things to do....there is still a life to be lived. Look forward to hearing from you😉🤗
              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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                #8
                Fraxinus

                you really have a great attitude which will really help you and support everyone else that needs a boost.

                Love and hugs
                Denise xx
                when i can think of something profound i will update this.

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                  #9
                  Fraxinus Hi, nice to virtually meet you. No apologies needed for the brain dump! Focusing on enjoying the now is a very good mantra to live by. As a career for my wife for the last 2 years I have a good idea what your fiancé is going through. Counselling has helped me enormously - the MNDA can help with that. This is a very supportive group, and might be helpful for your fiancé too.

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                    #10
                    Welcome Fraxinus, pull up a chair and join the crew.
                    Hi, I'm Eddie.
                    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                    Still walking and talking, and wondering what the future will bring.

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                      #11
                      Fraxinus welcome to the forum. You sound quite positive which is great. You could be stable for several years so continue with your plans and positive thought process xx

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                        #12
                        Thank you everyone for the warm welcome!

                        Ellie you are correct, no OT assessment yet. I’m lucky enough to have a small holding & as it’s quite steep and uneven in places, I’ve been using walking poles to stop the number of falls I was having. Last fall was getting out of the car, fell backwards with no warning and just missed getting a good wallop on the back from a wooden planter. Thankfully just a bruised bum!
                        Yes the EMG identified an issue mainly the legs but also in the torso and arms but at a lower level. I wish I knew more about the results.
                        We did ask the Neurologist if anything else was being considered, the answer was no. Is this a fair answer? I believe a small number of people do get misdiagnosed, what presents in similar way to MND?
                        I have been prescribed Riluzole and the local hospice’s MND specialist team is being notified.
                        I think this is why I feel the 2nd opinion will confirm the 1st.

                        Thanks again to you all.

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                          #13
                          Fraxinus I am awaiting confirmation also. Such a stressful time also. Positivity is key. But we are only human after all. I have healing once a week and my first session of reiki tomorrow to help my mind as well as my body

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                            #14
                            Originally posted by Fraxinus View Post
                            We did ask the Neurologist if anything else was being considered, the answer was no. Is this a fair answer?
                            In answering your question, the Neurologist would have considered your clinical exam findings in conjunction with the EMG results, and it's not a diagnosis which should be given lightly.

                            Might the MND Specialist disagree with the first Neuro, perhaps, it's not confirmed until it's confirmed. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Hello Fraxinus is that excelsior? One of my favourite woods to work with (or I used to work with)
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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