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Just Diagnosed-So much to take in

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    Just Diagnosed-So much to take in

    Hi- My Names Mark, I’m 39 years old, I’m from the West Midlands.
    I’ve just had my Diagnosis this week-Feeling a bit numb at the moment-So much to get my head around-all feels very overwhelming.
    My symptoms started just over a year ago with generalised muscle twitching, which if I’m honest, I didn’t really think anything of it. A Few months later I noticed my walking felt different-almost like I was walking with a slight limp- I was also tripping over quite often at work.
    I went to my GP who sent me for blood tests & a brain MRI-all of which came back normal. My doctor put it down as stress/anxiety related.
    Over the next few months I was getting worse-weakness in my arms & hands, my job was becoming more & more difficult (I’m a fuel tanker driver, so my job was very physical)
    Anyway to try & cut a long story short- I finally got an appointment with a neurologist in September-who referred me for an EMG & Nerve conduction tests.
    My neurologist told me I had motor neurone disease on Tuesday this week- still trying to take it all in at the moment.

    Last edited by Lythgoe81; 17 October 2020, 09:03.

    Hi Mark and Welcome to the Forum nobody wants to join...

    Yes, it's hard to get your head around the diagnosis - it does get easier with time.

    Have you foot orthotics to help/stabilise your walking?

    In the meantime, take care of yourself and stay healthy.

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


      Hello Mark, when I was finally diagnosed, after the initial shock, I discovered doors opening that had not been there before. Ask anyone on here about me and Stay Strong. 👍
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Thanks for the replies- No Ellie I haven’t seen anyone in regards to my diagnosis as yet-I’m waiting for a coordinator to get in touch with me, but any help with my walking would be good.


          Hello Mark and welcome
          it is a shock and it will take a little bit of time to come to terms with, you’re still early in diagnosis, but as Ellie says it does get easier,
          take your time, we are all different so anything you read is very scary and quite generic but once you accept it and learn about YOUR MND you can start to make some sort of sense of it, Don’t panic, there are quite a few people from the midlands on here who will be able to guide you through,
          and there are no daft questions on this forum,
          keep positive
          As long as there’s golf and beer I’m happy


            Hi Mark
            it's lovely to meet you. There's some wonderful people on here who will do there best to support you. I hope you join in with us and stay in touch
            Denise xx
            when i can think of something profound i will update this.


              Mark. You will get all the advice and help you need from this site. Welcome and stay strong. Richard


                Hello Mark and welcome from me.

                As others have said once you get over the shock of the diagnosis you can start to plan your future. You may be overwhelmed by the advice given by the health professionals as in the early days there is a lot to take in. Please don’t hesitate to seek advice from our very experienced members here.

                Best wishes.

                I’m going to do this even if it kills me!


                  Welcome to the forum, Mark. That's quite a brave step, your first post a few days after diagnosis, well done. It's a hell of a shock at first, but it does get easier.
                  Each day is made easier with a bit of humour.


                    HI Mark and a warm welcome from me to the forum.

                    I'm so sorry for your diagnosis... its such a shock and there is such alot to take in. It took me months to accept my diagnosis so well done for posting so soon. There is great support on here and hopefully you will access help from your MND team soon.

                    The early days are totally overwhelming but as Gary says it does get easier.

                    Take Care of yourself,
                    Love Debbie x


                      Hello Mark,

                      Well done on your post... you are so good to write it and become a forum member.
                      You are not alone.
                      I find it reassuring to read other members introductions and it makes me feel strong and capable
                      I was born just outside Meriden, Coventry and have family there. I now live in Bridgend, South Wales. I was in the Army and Police until 2017 when I retired at 55 yrs.
                      On my day of diagnosis, in June 2020 I felt shocked but immediately relieved that I could come off the unknown crazy road I was on and could join a motorway with services and help to a clear destination. I felt I must use my time wisely and crack on

                      I was able to focus on my situation, I still get upset but generally I can organise my priorities and goals and I feel I can relax and find positives and fun in some situations. I keep a smile knowing that it could be much worse

                      I take one day at a time... I try my best to make the most of a really difficult situation

                      I send you clarity, strength and positivity, to help you

                      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 Mark
                        I live in Warwickshire and was diagnosed in June this year. Of course it is a shock to us and our families. I found that I was contacted the week after diagnosis by the palliative care teams nurse co ordinator. I immediately thought I must be dying sooner rather than a bit later!!I I have to say the palliative care team are amazing support to my husband and myself. I realised they needed to do a baseline assessment of how I am now and offer advise and support for now and when needs change. We met the physio from the team who sorted me out with a walking stick and ankle supports as well as an exercise programme to stretch calfs as I was getting painful cramps. The dietician came to check my swallow was ok and we agreed how often she will ring me and ensured I have teams numbers. OT advised on planning a wet room, lifts etc. What I am saying Mark is once the support network of health professionals met us we felt very supported as they are on hand as and when I need them. I just cracked on with getting a blue badge sorted, a motability car came after receiving the benefit Personal independence payment.Just take it steady Mark as there is a lot of support and it can seem overwhelming at first. For me I was used to health professionals as worked as a hospital social worker until my walking deteriorated in January this year. Stick with this forum as although we are all at different stages of MND I find people on here are generous with their advise and time to reply .Best Wishes. Mary


                          How are you getting on Lythgoe81
                          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 Jeanette

                            I'm ok , neurologist has discharged me , been back to my gp and he's priscribed nasal spray,for my clicking sinuses , neurologist seems to thinck I dont need amg, still have swallowing issues but speach seems to be ok , ..I thinck I'm going to get a second opinion even though my neurologist is a proffesor in mnd ,and maybe get a private emg done ,dont like trending on folks toes though.

                            Many thanks
                            All the best


                              Hello Craig... I fully understand what you are going through. My 2nd neurologist couldn’t say anything until I had an EMG. The EMG was cancelled because of COVID and when I deteriorated he sent me to the lead MND doctor in my area. Then I was diagnosed!
                              If the lead Doctor in MND has signed you off surely it is a good sign and you can move away from MND
                              Best Wishes xx

                              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