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  • JFarrell96
    replied
    Rachel, thank you for the reply I have a GP appointment tomorrow to get to the bottom of everything she is going to go through every note the neurologist left off the last visit and go from there, I know I have spoken to yourself on numerous occasions and people have told me I don’t have MND. I am sorry I really do apologise

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  • MNDConnect
    replied
    Hi Jordon

    We spoke yesterday on the telephone about your concerns and have done previously many times. Your neurologist has confirmed that you do not have motor neurone disease (MND). They are so convinced of this that they have declined to see you again.

    As we discussed yesterday, you need to try to take this information in. There is no reason for you to be concerned abut MND. You don't have symptoms of MND. You are concerned that you have bulbar onset but you have no symptoms of this and your speech is normal. Your friend also confirmed for you that your speech is normal.

    As I said yesterday, you need to stop focusing on MND and analysing your speech. Please don't let a disease that you don't have, destroy your life like this.

    In our conversation, I suggested that you speak to your GP about changing your medication for your health anxiety. Did you discuss this with your GP?

    Best Wishes

    Rachel
    MND Connect Adviser

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  • PeterPan
    replied
    I don’t know how these things work, but I’d suggest that your next session needs to be a lot sooner than 12 months time! That’s not satisfactory and I think your GP would probably agree. See what you can do to change that.

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  • JFarrell96
    replied
    Thank you for your response Peter I appreciate your reply, I understand what your saying just very worried I have spoken to my GP I had my first councillor session and they took information from me and they said the next session is in 12 months time, I’m just scared😢

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  • PeterPan
    replied
    JFarrell96 Hi Jordan, think about it. How would any of us know if your neurologist might be proved right or wrong after nearly two years? Most of us are just ordinary people who have been unlucky enough to end up with MND. The only experience we have is our own. We’re not professors, consultants and doctors.

    The likelihood is he or she does know what they’re talking about, but I don’t know.

    Talk to your counsellor about your fears; I don’t think any of us can help you. Take care and please enjoy Christmas with your family.

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  • JFarrell96
    replied
    This is what my neurologist said on the letter sent out I only received it recently, I’m sorry for upsetting anyone I’m just so scared and I keep getting worried, my last question I’m going to ask is if I saw my neurologist in 2020 and he said I haven’t got MND I’m sure the chances of me getting it after seeing a neurologist who ruled it out would it be rare for it to happen nearly 2 years on, as I said I’m scared because I’m 25 And have a young family to look after

    any advice is appreciated

    love jordanForm

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  • Zante
    replied
    I looked Peter and found one briefly looking but don't know how to post it so will give it a go!

    tried to Copy and paste and it isnt happening! I literally googled health anxiety forums uk! i find it worrying when a specialist tells someone they thankfully don't have a certain disease and yet a patient is adamant they know they have and will pay to source second opinions and get same result. X

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  • PeterPan
    replied
    I have real sympathy for the people who say they are ‘scared’, ‘frightened’, ‘terrified’ and all the other similar words we see. But it scares me (for their sakes) and unsettles me a lot - maybe because I worry that I have never felt that bad.

    This really isn’t intended to be a crass or insensitive thought, but I wonder if there is a forum for people with health anxieties that we could suggest they take a look at.

    Jordan, please believe the people who stick their necks out and tell you that you’ve not got MND. Please also work hard with your counsellor. S/he may be able to relieve your anxiety if you make it possible. Good luck!
    Last edited by PeterPan; 2 December 2021, 20:19.

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  • matthew55
    replied
    Who ever thinks life is fair? 🤔😁🤗😘xx

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  • Graham
    replied
    I know JFarrell96. I was afraid too when I was younger. Life is unfair but then you have to question what fairness is?

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  • matthew55
    replied
    To be fair I have had hours of counselling and I still can't see the point. Change comes from inside us. If you don't want to change you won't. If you do you will. Simples. 👀😜😁🤗xx

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  • Zante
    replied
    I agree with the posts above. I do understand that health anxiety must be debilitating and a constant fear. But neurologists who have spent years within their specialist field have said to you that this is not mnd. Didn't the relief put your mind at rest? Weren't you overjoyed that you do not have mnd? Why would you need to question their diagnosis when the medical professionals have said it isn't mnd? I think some therapy to discuss not only your fears but more importantly work on the why u can't believe what you have been told. Try and understand why this obsession is taking over your thoughts and life? Surely then you can put these thoughts behind you and start living without going over and over everything again and again 2 years down the line. Am sure your intentions weren't too hurt people here but as Ellie said it does and will continue to each time. Be honest and open with the counselling to get the best out of it.

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  • Nettie
    replied
    Originally posted by Ellie View Post
    Jordan, please take a step back and think about where you're at: you have been repeatedly told that you do not have an MND, but you're here asking us, who are severely disabled, using ventilators to breathe, cannot speak, cannot use our fingers to type and are dying, what you should do.

    If you have even a modicum of compassion, you would realise just how inappropriate your latest post is.

    Get help for your self-declared health anxiety.
    Well said Ellie 👏👏👏 x

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  • Mary C
    replied
    JFarrell96
    Please be really open with your counsellor and as you build up a relationship he/she should be able to help you with strategies to cope with your anxiety thoughts.Anxiety can be overwhelming
    Enjoy your young family and be glad it’s not MND.Use the tools you have to hand, relaxation techniques( plenty on you tube).
    Take up a hobby, concentrate on doing something for others ie voluntary work.etc.It’s not good to keep thinking about yourself possibly at the detriment of not being fully available to your family.
    Good Luck and think you have to realise that this isn’t the forum you need.
    Mary

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  • Ellie
    replied
    Originally posted by JFarrell96 View Post
    I was airing out my fears to see if I can get some advice
    JFarrell96 You still don't get it, do you? I need to spell it out for you Jordan: you are being cruel to us at this stage.

    Work out your fears with your counsellor, not us.

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