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Hi Everyone from Andrew in Chester le Street

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    Hi Everyone from Andrew in Chester le Street

    Hi All

    Just wanted to introduce myself to the group.

    I’m Andrew 60 years old recently retired end Feb 2022 and I live in
    Chester Le Street, County Durham. Married to Jan with 3 adult boys.

    I was diagnosed yesterday with Bulbar onset MND. My symptoms started in July 2021 with slight slurring of speech. I was immediately sent to the stroke clinic and had a CT scan and this was clear. Some significant tongue fasciculation was noted at this time but was not dwelt on.I was sent home with an outpatient appointment to see a neurologist in September. After a thorough physical inspection he concluded that my speech issue was probably mood and anxiety related. I was experiencing some anxiety as I was in the process of retiring but was not convinced this was the cause of my speech issues as I have been anxious most of my life . I was also experiencing what I now realise to be pathological crying which continued for many months until I eventually made the connection to this being a symptom of MND.The neurologist set a follow up appointment for March 2022. In the meantime I underwent a speech therapy course.I also commenced on Sertraline and undertook a CBT course to address the anxiety and mood. The CBT helped as it gave tools to address my thoughts/ feelings etc. I did not like Sertraline as it made me feel a bit fuzzy and I did not believe I had depression in any case, so I came off that. By the time of the March appointment my speech was very poor, I had fasciculations in my arms and legs. My left arm was weak and my left grip very weak, I had footfall in my left foot and was experiencing some swallowing issues and some hand cramps. The neurologist arranged some EMG tests which was a very thorough exam on the 22 April. The results were with the Neurologist for a follow up consultation just a couple of days later when my wife and I were given the diagnosis confirming the thoughts that we had kept to ourselves over the last several months.

    That is my MND journey so far and I am so pleased to have found this forum to benefit from the experiences of the group and to share my own in the hope that sharing will make the journey that bit easier for us all.

    From what I have read on here so far I am sure it will.

    #2
    Hello Andrew. Welcome, although I am sorry about your diagnosis. I have bulbar onset MND too although it has not progressed to my limbs so far. You will find a lot of support here. x
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

    Comment


      #3
      Andrew a very warm welcome to the forum. You’re right this a great place for advice & support & general chat about anything & everything.

      Early days feel very manic (in my experience) take time to just be still & gather your thoughts.

      xx
      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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        #4
        Andrew A warm welcome to the Mad House, Andrew. 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
          Hi Andrew

          I'm glad you found us. This is a great place to pick up some great information, support and have a laugh and a cry. We are all here for each other and hopefully make things a bit easier.

          My family are from Sunderland.

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

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            #6
            Hello Andrew,

            A welcome from me too, we are in Northumberland (Hexham way) so not too far from you! You will find the MND clinic at the RIV absolutely brilliant. The level of care you get is second to none. xx
            Carer for my husband who was diagnosed with ALS on 15.12.21.
            Trying to think of only today and tomorrow
            Alison ♥

            Comment


              #7
              Hi Andrew. Glad you told us your journey. I am also bulbar onset. I am very similar with weakness in legs and arms & speech. Did you manage to bank your voice? X
              Diagnosed May 2021 bulbar onset als.

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                #8
                Hi Andrew 👋
                Foxes Never Quit 💙

                Comment


                  #9
                  Andrew Welcome to the forum a great source of support, information and good humour.
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                    #10

                    Originally posted by Andrew View Post
                    I started smoking a few weeks ago and that interestingly had a marked favourable affect on the frequency and intensity of the crying episodes.
                    Hmmm, that's interesting Andrew.... Was that waccy baccy or the regular stuff, if you don't mind me asking. xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Welcome to the forum Andrew and sorry for your diagnosis. Mine started with slurred speech last June. You will find you are not alone and will get lots of support from the lovely people on here.
                      Diagnosed 3rd November 2021 Bulbar Onset

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                        #12
                        Hi Andrew.

                        Welcome to the forum. Sorry to hear it’s for the same reason of most others here.

                        best wishes
                        Marc

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                          #13
                          Hi Andrew. Sorry about your diagnosis. My husband was diagnosed at 66. Four years later he has weakness in both arms and legs. Slight changes in speech and swallowing and still walking albeit more slowly. It’s very daunting at first but the forum helps th share experiences and support each other on the down days. Sending kind wishes to you xx

                          Comment


                            #14
                            Thank you all.

                            Hi Ellie

                            No problem with you asking. Just regular cigarettes. I mentioned it to the Neurologist and he said something like nicotine had a similar affect on the brain as some of the medicines used for pathalogical crying/emotional lability, so he was not surprised.

                            Comment


                              #15
                              Hi Shelley

                              Unfortunately it never crossed my mind to bank my voice.
                              My communication is moving towards A4 whiteboard and marker pens whilst I still have the use of my hands. It means I don’t have a voice so if anyone has any recommendations for an app that I could use to convert text to speech that would be appreciated. My writings not the neatest so the whiteboard has its limitations.

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