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    Suspected to confirmed diagnosis

    Well I heard this week my suspected most likely mnd diagnosis is now confirmed and have had a call and letter and info pack and am due to meet the care coordinator very shortly. I feel devasted even though its been looking likely for months, it felt so upsetting to hear it officially. I don't know what to expect from first appointment but she sounded very lovely and supportive when she called. Is it normal to feel some form of denial when you are still mobile? It's really hit me this week and my mood has dropped so much I have lost interest in anything I did or liked. I hate feeling sorry for myself and its difficult. How did members get their head around it and move to living each day instead of just wanting to cry and do nothing ? Sorry for rant but I feel so lost. Thanks for reading.

    #2
    Zante I am so sorry you have a confirmed diagnosis. Yes, I think it is normal to feel a sense of denial. I still feel several months after my diagnosis. Apart from my speech, my other symptoms do not seem to match those described for ALS. I found it hard at first but gradually I found that I was able to move on from constantly thinking about my future. I still think about it most days but it doesn’t consume all my time. x
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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      #3
      Thanks Hope. I think just the words having it suspected to then receiving the paperwork and grim reading and phone calls made it all real. The care coordinator said she is going to go through everything and the support available. Can I ask did everyone have to phone dvla and if so do they do a driving assessment as it's a notifiable disease for driving? I can still drive and being single am desperate not to lose that whilst I am OK to?

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        #4
        Zante it’s a awful time when given the diagnosis, and it will take time to sink in. It truly does get better and you will get to the “acceptance” stage where you will hopefully appreciate each day and do as much as you can when you can.
        It’s my husband who has MND and he is almost in to his fifth year since diagnosis. My husband still gets pleasure from most things. He is still walking ,eating and communicating. Be kind to yourself at this very daunting time. You will feel better soon.xx

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          #5
          Piglet thank you for your kind words. I had read before that your husband was in his 5th year and still managing to do a lot which is inspiring and gives people hope of course. My neurologist said to me the longer it takes to diagnose mnd the slower the progression... I was a year exactly from first neurology appointment to diagnosis and haven't a clue if that is quick or slow! Thanks for listening. The forum is such a welcome place.

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            #6
            Zante

            I am sorry that you have had your diagnosis confirmed. I am surprised they did not tell you face to face. It is a huge shock to go from suspected to confirmed, as up until that point the voice in your head trys to convince you it is not MND.

            It takes a while to come out of the denial phase and like yourself and Hope I am still mobile. I still think about it every day too. It is worth exploring counselling but I have taken anti depressants since diagnosis.

            As regards the DVLA there is a medical form you can print off and return to them.They then contact your neurologist who will confirm your fitness to drive. I am still driving eights months after diagnosis. I have had no assessment.

            It does get better and every day I think of things I can still do. x
            Diagnosed 3rd November 2021 Bulbar Onset

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              #7
              Zante I am still driving. I had to inform my insurers and the DVLA of my diagnosis. There is a downloadable form on the government website. There is a backlog of work at the DVLA and I have only recently had an acknowledgment of my form. I assume I will hear more once they have contacted my neurologist (who told me there is no reason why I cannot continue to drive).
              Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                #8
                GillB I was also very surprised and shocked to receive the news via the post. It had been raised before as a likely option but like u said different for when confirmed. I am just thankful I am still mobile. Thank you.

                Hope and GillB I am relieved to read that you are still able to drive. And I hope to continue for as long as possible. So its a neurologist who decides and not a GP cos I didn't know how that decision was made and how often your ability to safely drive is looked at etc.
                thanks as always for replies. I have a small list of questions for first appointment but don't want to inundate the poor lady nor me!

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                  #9
                  Zante - so sorry to hear how your diagnosis has been confirmed.

                  I was told to do an online DVLA form immediately and my cleaner ended up phoning my car insurance for me. I did the form in January and had a letter confirming. I do still drive (automatic) but rarely now and it is getting harder. My left arm gets too tired to grip the wheel after a while.

                  As for denial. Well, I was misdiagnosed for years and when I did get the diagnosis I still feel like maybe I'm a fraud or imagining it, or not bad enough. Which is crazy when my logical head is on. But I think I wasted so long thinking it was nothing. Then it was something so serious I still don't think it has sunk in.

                  I know it sounds daft, but when I have my doubts I do things like try to move my left foot or spread my fingers. It makes me realise I'm not imagining the very real changes. But then it is scary.

                  I hope you gradually settle into this like I have. But it did take time and I still think maybe I'm wrong or an imposter.

                  Sending hugs xx
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                    #10
                    TinyLady yes i understand everything u have said thanks and can relate to not feeling unwell enough or poorly enough. I suppose its also varied on how early it's been diagnosed and how slow or quick the changes happen.
                    I will contact my insurance company and dvla once I have seen the mnd nurse next week. You would think there were more things to worry about but I am hoping it won't make the car insurance premium jump in price cos I only just renewed and it was expensive enough! My arms feel tired if I hold the steering wheel in the 10 to 2 position but not as much further down.
                    Big hugs and thanks xxx

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                      #11
                      Hi Zante, whilst it may have been a suspected diagnosis for some time, actually having it confirmed would still have been a shock.

                      My Dad has bulbar onset so is still mobile and, while other aspects are difficult for him, I'm grateful he has his mobility.

                      He's 70 next week so has had to renew his drivers license. He filled in a form online and the DVLA said they would write to his consultant. She was very quick to tell us that she just answers the questions and the DVLA make the decision. She did however say she didn't see why he couldn't continue driving (despite having very weak neck muscles at the back of his neck which means he needs to wear a neck brace). Dad is understandable keen to continue driving while he feels it is safe to do so, he only drives short distances.

                      I hope the appointment next week will help answer some questions, give yourself some time for it to sink in and to adjust to it being confirmed.
                      ​​​​​​
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                        #12
                        Claireflo thanks so much. Best wishes for your dads birthday next week. I also only drive short distances. The main one is my daily trip of 4 miles to the Moor to walk my dog off lead so want to hang onto driving for as long as possible. Thanks x

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                          #13
                          Zante This may all sound a bit theoretical, but a psychologist called Elizabeth Kubler Ross did some research and came up with ‘the change curve’. Shock and denial are the first response to s devastating change, then some anger and frustration. Don’t worry, acceptance comes a little later. Plenty of info online information about Kubler Ross. Knowing the theory does make things easier. Hope it helps
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                            #14
                            PeterPan thanks I shall have a look tomorrow when not so tired. Thank you.

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                              #15
                              [QUOTE=Zante I will contact my insurance company and dvla once I have seen the mnd nurse next week. You would think there were more things to worry about but I am hoping it won't make the car insurance premium jump in price cos I only just renewed and it was expensive enough!]

                              Car insurers can’t penalise you just for having a notifiable illness which would constitute disability discrimination.

                              I have had my licence renewed twice now. Neurologist does just answer DVLA questions for them to make the decision. I got a reminder that they were still waiting for neurologist’s response after end of 1 year renewal period and could I remind him but went on to say they realised doctors were busy dealing with pandemic issues and licence would continue until he had responded.

                              I have just sold my car since it wasn’t getting much use and hoping my wife will let me drive hers but probably only when she’s with me which defeats the object of the exercise really! By the way, I sold the car via Motorway.com which I would recommend trying. They got me a really good price. Their site is ingenious and relatively simple to use.
                              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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