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I’m so terrified

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  • Helen212
    replied
    Sorry Rachel,

    I didn’t realise I could do that. I started another just called upcoming appointment. But thank you

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  • MNDConnect
    replied
    Hi Helen212 I can change the thread title for you if you'd like. Let me know what you want it to be and I'll edit it.

    Best Wishes

    Rachel
    MND Connect Adviser

    Leave a comment:


  • Ellie
    replied
    Helen212 Why don't you wait until after your Sheffield appointment to start a new thread? You may not even need this forum.

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  • Helen212
    replied
    Thank you Peter I will do that and be more thoughtful about what I write and title.

    Many thanks
    Helen

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  • PeterPan
    replied
    Helen212 To start a new topic go to the following page and you should see what to do. Don’t think you can change a title 😀

    https://forum.mndassociation.org/for...sk-mnd-connect

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  • Helen212
    replied
    Can anyone advise me how to change title or begin a new thread thank you very much.

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  • Helen212
    replied
    Ellie I hope you don’t mind I’ve sent a message to you.

    Thank you

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  • Helen212
    replied
    Peter, I’m sorry what you say makes sense.

    Thanks

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  • Ellie
    replied
    Originally posted by Helen212 View Post
    I have an appointment in Sheffield on Tuesday
    With which Neurologist?

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  • PeterPan
    replied
    Helen212 Glad you have a follow up consultation so soon. Of course people will give you support based on their experiences- remembering that none of us are medically qualified.

    If you feel embarrassed about some of your previous posts on this thread, why not start a new thread with a less scary title? I have to say every time I see ‘I’m so terrified’ it makes me feel really anxious and uncomfortable!

    Best wishes for this week.

    Leave a comment:


  • Helen212
    replied
    Hello

    firstly I can 100 percent see how My previous posting has been not really appropriate and again I apologise for anyone I’ve angered or upset. This was never my intention I can’t reiterate that enough.

    I had my first abnormal EMG on Thursday. I am very worried. I have an appointment in Sheffield on Tuesday having to travel a great distance. This is NHS and I hope and praying someone who will listen. I was fitted in within 2 weeks and for this I’m so grateful.

    May I please use this thread in the future for some support as I’m very lonely in all this. Understand little of it all.

    I move a week on Monday with my daughter. She’s amazing. Masking all this is becoming hard though.

    I understand everyone of you everyday has little energy for undiagnosed people like myself. I’ve spoke to Jackie at mnd connect at length she’s been so kind. Friends of 25 years seem to think ‘you’re ok you had that test in august’ the 2 close friends have read there’s more to it than that have seen my symptoms and understand. Admitted they’d be terrified too.

    Again I accept my posting has been innapropriate and I’m very embarrassed when I read back.

    sent with utmost respect from a really worried Mum of 1.

    Wishing only kindness and good things to all

    Helen

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  • Helen212
    replied
    I apologise for offending anyone on here.

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  • MNDConnect
    replied
    Hello Helen

    I'm sorry that this is still a concern for you. We've discussed your symptoms at length many times, both on the forum and on the telephone. The symptoms that you have are not typical symptoms of motor neurone disease (MND).

    You need to discuss your concerns with either your GP or a neurologist. Whilst the forum is here for people with MND as well as those who may have MND, it is not an appropriate place to discuss concerns. Many of our members are people living with MND and it can be quite distressing for them to have people who don't appear to have MND, posting about symptoms and asking for advice.

    If you'd like to discuss your concerns further then please do give us a call on 0808 802 6262.

    Best Wishes

    Rachel
    MND Connect Adviser

    Leave a comment:


  • Helen212
    replied
    Constant feeling of sticky saliva, every joint clicks as I move others are noticing. I Cried and had a jaw spasm which I literally had to hold to stop. I’ve started sleeping with my mouth open which I never used to do. Sleeping on side I don’t seem to get the jaw snapping tongue as bad. My friend videod my tongue alive at rest yesterday. Neuro barely looked in my mouth just asked me to press tongue into cheeks. I’ve kept a record of everything.

    sending my thoughts to you all. I’ve looked at a couple of Facebook faces I’ve every single symptom I’ve had to stop looking though as some of the stuff is very sad, pictures etc.

    my musings will be a world record thread and I hope you don’t mind me taking up this space. I’d hoped and thrived to get better, not worse.

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  • Helen212
    replied
    Does anyone know if it can bring on early menopause or affect periods the last two months have been all over the place after 48 years of clockwork timings. Sorry to the males to ask but it’s all happening so quickly I can’t keep up with my body.

    Leave a comment:

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