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    Just diagnosed

    I am a 54 year male married to my wife 30years this year I have been diagnosed with mnd after 8 months of prodding and mri scans Ii was finally diagnosed with it yesterday to say I am devastated is an understatement shock ,despair and no hope .hope people can help me through this thank you in advance

    Hi Tom

    I am so sorry about your diagnosis. My husband was diagnosed 2 years ago and it really was a terrible shock. He'd taken early retirement and we'd moved abroad. We try to take each day at a time and make the most of what we have. It's hit him physically and mentally. It's hard I can't deny that and for family too.

    this is a lovely forum. Serious stuff, humour, every problem you could think of it's all here. We are here for each other.

    love and hugs to you and your family
    Denise xxx
    when i can think of something profound i will update this.


      Hello Tom and welcome to this band of brothers and sisters who will offer support and advice.

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


        Hi Tom “shock, despair and no hope” pretty much sums up many people’s first reactions. It will take a little time for you and your family to get your heads around what’s just happened but and this is the thing the fog will clear. There is an enormous amount of help and support available out there not least of which you will find here.

        When you or your wife are ready ask anything you like. There aren’t many things that the lovely people on here haven’t experienced.

        Take care.


          A warm welcome to you Tom.

          I am in awe of your bravery in being able to post on Day 1 after your diagnosis - the shock does lessen, it has to otherwise it's all consuming.

          The early days can be overwhelming, especially if you have multiple appointments with various health professionals, so take any information you're given in bite sized chunks, rather than trying to take everything in at once.

          We are here to help answer any questions, read your rants, join you for a laugh, whatever.

          Nice to hear you have your wingwoman by your side - she must be devasted too.

          A big hug to you both.

          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 Tom to the place no one wants to be When I first got confirmation I totally broke down, for an hour or two. The rest of it is documented on here. Read it if you dare. 😁x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              Hello Tom

              I am so sorry that you have found yourself here but rest assured we are all very friendly and will support you and your family by helping you find the way through the confusion and desperation you are experiencing at the moment.

              You will be bombarded with information and people such as the community team and my advice would be to take your time and keep a notebook with names and numbers and the service they offer. You will find it all consuming but the way I coped after the initial shock was that I was no different than yesterday but now it has a name. That put me in in a practical state of mind and I have tried to manage it like that ever since.

              Be kind to each other and take your time x
              much love to you both x Sarah xx


                Tom sorry you have to come on here - in the nicest possible sense - it wasn't the same shock for my husband as you have experienced as they passed him from pillow to post for 2 years before finally coming up with a diagnosis - its so hard to define as I have come to realise, he simply went for the final diagnosis, took it on the chin, came out and said that was to be expected then,

                Two years ago when he was told to expect a "Diagnosis of MND" I thought he'd be a gonner by that Christmas, that consultant deserves a good smash in the face to be honest, put us through 2 years of hell,

                BUT, I have since learnt that there is time to be had - no way did I expect him to survive this time, BUT he has the slow progression of PMA and, granted, he no longer walks but its not been the total negative we first thought - might not be that way for others though.

                Best wishes

                Husband Albert diagnosed PMA Feb 21


                  Hi Tom,Shock ,disbelief and a range of emotions are so normal when you get the diagnosis.I actually had a sense of well at least I know what’s wrong after all the months of tests .We are all different but take it at your own pace. Glad you found this forum for you and your wife early on in diagnosis.As well as coping with the need for support from health professionals its important you to carry on with whatever brings you both enjoyment.I am 10 months post diagnosis and found this forum has been my run to place !As others have said there is a wealth of experience and advise when you ask for it on here.
                  Best wishes Tom


                    Tom, I'm so sorry for your diagnosis... You must feel totally overwhelmed at the moment. Well done for posting so soon when the shock must be so raw.

                    After I had been diagnosed my husband said .. Youre still the same person you were yesterday. We try to take one day at a time.. not always easy as our hopes and dreams for the future are changed.

                    The forum is a good place for friendship and support. Please ask any questions or feel free to have a rant. It probably seems hard to believe at the moment but there's lots of humour too.

                    Take care of yourself and each other,
                    Love Debbie x


                      Thank you all I am overwhelmed by your reply’s thank you and thank you again


                        Sorry you find yourself here Tom. I found suefromwakey comment "that consultant deserves a good smash in the face to be honest, put us through 2 years of hell" horribly true and funny and perceptive. Feels like we're doubly punished - by getting mnd and having to wait in agony of knowing but not knowing x​​


                          Hi Tom, and despite your recent horrid diagnosis well done for finding your way here so soon. It surely is devastating in the early days but usually eases eventually.

                          I hope that all of the usual professional services turn up for you quickly. Covid has made delays occur for some but now that lockdowns are easing things ought get going again.

                          Love Lynne x

                          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.


                            Hi Tom. The diagnosis is always horrible news and then all the worries and concerns start to come. Take one day at a time. Sharing your news with friends and family is also hard. As I have said many times you can laugh, cry, shout and scream. We have all done it. On this forum feel free to ask whatever, we are here for each other.



                              It is interesting how people respond to the diagnosis. I had often been for tests for a variety of ailments, and nothing was ever found. So it was kind of positive to get an answer (took 2 years and me pushing for a referral to get there at all). I decided at the time that i was going to be like Stephen Hawking and survive until i am 100; I have now accepted that, that might not be realistic, but was still trying to live my life the best way possible. Not feeling too good over the llast few days, possible riluzole side effects, but intend to be back to normal asap.

                              My mother was never down hearted, she was finally able to give up her pills for mental issues, and loved the attention she got. Sadly, her wish for a long life, were not answered. She died in 1979, aged 55.
                              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.