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Thread: any advice please

  1. #1
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    any advice please

    Iím 19 years old and completely new to this forum. I found out very recently that my mum has Ďprobable mndí. She was told this from a MND specialist at a local hospital. Back in May/June 2019 she all of a sudden started feeling twitching sensations in her arms and legs constantly and it hasnít gone away. She went to the GP who referred her to neurology etc etc and has now been told itís probable MND. Absolutely devastated and In complete shock is an understatement. I just refuse to believe this is what she has. Surely things should of / would of deteriorated 6 months down the line? The neurologist said nothing else showed up on all the tests sheís had so it canít be anything else. A few years back (3/4 years) she had a pins and needles sensation in her arms and legs again, had multiple tests for MS but was told it was related to her severe migraines that sheís had since she was a child. She was told her brain had been damaged due to the strength of the migraines she has.

    Any advice / information please please please.

  2. #2
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    She hasnít got any other symptoms and the pins and needles from years ago eventually went away. Please help

  3. #3
    Forum Member Barry52's Avatar
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    Hi Rachel and welcome to the forum.

    I’m sorry if your mum has MND and what you say about expected progression isn’t necessarily the case. Some forms of the disease are slow in their expression of the symptoms and can take years to impact. I hope it may be a false diagnosis and although it will be difficult I hope you can stay strong for her sake.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #4
    Forum Member Lynne K's Avatar
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    Hi Rachel, very sorry about your worry but I can't advise. Unfortunately she's going to have to wait for the neurologist to give a diagnosis. I think that it's best to speak to your GP and get referred to councelling. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
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    Thank you for responding. Iím just clinging on to every last bit of hope that she doesnít have MND. My mum and my family will not cope with this and Iím heartbroken. Iím just praying that things donít deteriorate in the next 6 months as he said he would refer her for further tests to see if it COULD be anything else.

    I canít function and I canít go ahead and get on with everyday life. Iím constantly anxious and Iím a flood of tears. I work full time in a recently newish job that I do really enjoy. I have had the last 2 days off since finding out and hoping to try and go in tomorrow but I just canít stop crying and I want to spend all the time with my mum. What should I do?

  6. #6
    Forum Member Lynne K's Avatar
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    As I said Rachel speak with your GP. If you cannot function you need time off work and whatever the doc suggests to help. But be honest with him or her. Book a double app so you have time to talk x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #7
    Forum Member Terry's Avatar
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    Hi Rachel and welcome to the forum;

    I would go to work with a letter to your boss, explaining the reason you could be upset sometimes during the day. Don't know what your new job entails but there maybe some space for you to go. It does take a while to function after something like this. Believe us as we've all been through it.

    Please feel free to ask any questions or share things with us like you have already done.

    Strength & best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #8
    Forum Member Gillette's Avatar
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    Hi Rachel, Iím sorry youíre having to deal with your Mumís ďpossible ď MND diagnosis.

    Did your Mumís neurologist explain what he or she meant by ďprobable MNDĒ? He or she wil have meant either:

    (1) that she probably has MND
    or
    (2) that her symptoms fit what is actually known and classed as a Ďprobableí diagnosis of MND.

    By one means of diagnosing MND, the presence, or absence of various symptoms leads to a patient being diagnosed with:

    ĎPossibleí MND
    ĎProbableí MND, or
    ĎDefiniteí MND.

    This latter way of categorising MND can be misleading. For example, because I donít show a particular symptom I am still classed as having Ďpossibleí MND, although itís pretty obvious that I do have MND.

    I know this can be confusing but it can be important when trying to make sense of what the neurologist said.
    Dina

    Trying to keep positive, but not always managing.

  9. #9
    Forum Member MNDConnect's Avatar
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    Hi Rachel

    I am very sorry to hear that your mum has been advised that she has "probable MND".

    Does she have any symptoms other than the fasiculations? It's very rare for someone to have fasiculations with MND and not to have any other symptoms. After 6 months, with MND you would certainly expect to see other symptoms appearing.

    Do you know which MND specialist she saw and at which hospital? It sounds as though it may well be worth your mum asking for a second opinion. Here at the MND Association helpline, we do have details of local specialists.

    Please do give us a call at the helpline on freephone 0808 802 6262 Monday-Friday 9am-5pm and we can talk through the situation with you and hopefully be able to offer you some useful information and support.

    Best Wishes

    Rachel
    MND Connect Adviser

  10. #10
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    Can anyone give me advise please. I've been told that you can't feel muscle twitching only see it, is this true! Also has anyone experienced retching or sweating in the mornings? I'm told this is not a common symptom. What is the average age to be diagnosed? I'm 46yr old female

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