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Just Diagnosed-So much to take in

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  • Cae1977
    replied
    Hi , I've been having muscle cramping and ankle weakness and problems swallowing and perceived slurred speach , I had extensive emg and nerve conduction test carried out at end of November 2020 all came back normal , do you thinck I should ask for second private emg test as the 1st was carried out nearly 8 months ago.

    All the best

    Craig

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  • Jeanette Pearce
    replied
    Well done Mark
    Every time I cry I say they are happy tears and it helps lift me out from the sadness which caused me to cry. The smile turns into a giggle and I remember to feel grateful for everything good in my life
    Keep positive as much as you can
    Best Wishes
    Jeanette

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  • Lynne K
    replied
    Hi Mark, welcome to our forums. You have a good GP and Neurologist by the sound of it to have gotten your diagnosis so quickly. It is very scary in the beginning but we all come to terms with it one walker or another. Take care, Lynne

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  • Lythgoe81
    replied
    Jeanette Pearce Hi- sorry for the late reply, we’ve been away for a few days.
    im not doing too bad thanks-been a crazy few weeks since diagnosis, appointments nearly every day.
    im getting a few side effects from the medication-mainly nausea and excessive saliva.
    my mnd nurse has told me to just stick with it, as side effects will subside over time.
    im feeling a little calmer now than I was the initial days after diagnosis-luckily family & friends have been amazing & supportive.
    I want to try & live as normal life as I can for now-but just taking it all one day at a time.
    how have you been keeping?

    Leave a comment:


  • Cae1977
    replied
    Hi ellie
    I understand what you are saying,im trying to also get a ent appointment asap ,my local village doctors has just merged with another 4 village surgerys,so it's a bit of a nightmare getting a appointment as it is all over the phone consultanting, excuse my poor spelling , I'm sorry if I've upset you,I have the upmost respect for you guys who have this cruel disease and take time to reply and help with people like myself I thinck they may be presenting symptoms.

    Many thanks
    God bless
    Craig

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  • Ellie
    replied
    Craig, your primary worry now seems to be your swallow related issues so, if you're going to fork out for a private assessment, would it not be better spent on an ENT specialist?

    Originally posted by Cae1977 View Post
    I have great trust with the neurologist,even with out emg test
    I'm sorry to point out that you obviously don't, given that you want to proceed with the EMG. Pease don't get upset with this but, despite your protestations, you appear to be quite anxious, as your ongoing posts reflect.

    So, all things considered, give some thought as to what you want to do next and, importantly, if you do go for private tests, will you be able accept the results?

    I truly wish you all the best and hope you don't end up down a rabbit hole - life is tough, stressful and out of kilter for everyone right now, you don't need to add to that.

    Love Ellie.


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  • Cae1977
    replied
    Hi Jeanette
    I have great trust with the neurologist,even with out emg test ,it just the swallowing is not improving and my speach seems to be slurring on certain words like crisps ,chips biscuits, do you thinck I should go down route of second opinion and pay private for emg ,or leave it a while, gp is saying anxiety, never had anxiety in my life.

    Many thanks
    God bless
    Craig

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  • Jeanette Pearce
    replied
    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



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  • Cae1977
    replied
    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
    Craig

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  • Jeanette Pearce
    replied
    How are you getting on Lythgoe81

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  • Mary C
    replied
    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

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  • Jeanette Pearce
    replied
    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

    Jeanette

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  • Deb
    replied
    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

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  • GaryM
    replied
    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.

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  • Barry52
    replied
    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.

    Barry

    Leave a comment:

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