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  • Guest's Avatar
    Guest replied
    David so sorry to hear about your wife. My struggle to get a diagnosis which I hope beyond reason will be for MS or functional disorder but which my prior knowledge says is most likely MND. Must seem preferable to your reality. All the best to you and your wife

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  • MNDConnect
    replied
    Hi David,
    I was so sorry to hear that your wife has been diagnosed with MND and for the way the diagnosis was given. This understandably must have been deeply distressing for you both. I was also saddened to hear that your wife was not offered help with her mobility problems.
    I wondered given the difficulties your wife is experiencing in relation to her self-care and the fact that you are assisting her with every aspect of her care, whether you had considered seeking help and support with her day to day care. If this is something you and your wife wish to explore, please see the following link for further information -
    https://www.mndassociation.org/wp-co...ocial-care.pdf
    I do hope this information is helpful. However, please do not hesitate to contact us here at MND Connect. As well as our forum thread, we can be contacted by phone on 0808 8026262 (Freephone), Monday to Friday 9am to 5pm and 7pm to 10.30pm. Or via email at [email protected]
    Ruth
    MND Connect Adviser

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  • shrew
    replied
    Welcome David. Sorry to hear of your Wife's daignosis. It's a difficult time
    Take care
    Sheila

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  • Lynne K
    replied
    Hi David. Welcome to the forum. I'm very sorry that your wife was diagnosed and in such an insensitive way. I would go to the appointment if I was you. I had been given one foot device that ties in to my shoe laces. I bought another one myself. Good luck. Lynne

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  • Barry52
    replied
    Hi David and welcome to the forum.

    I’m sorry to hear that your wife has been diagnosed with MND and I really thought these days that doctors were more sympathetic when breaking the bad news but in your case it appears not. I understand how you both must feel as I had a similar experience 7 years ago however I am pleased I proved him wrong with the prognosis. Some people plateau following a downward spiral so I hope this will be the case for your good lady.

    Barry
    If

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  • Guest's Avatar
    Guest replied
    Hi David so sorry about your poor wife and her fast progression. I had symptoms from November 2017 and knew by January in my mind what it was as my father had passed at a similar age from MND 26 years earlier. I started with a slow foot then rapidly to leg, Legs, Voice and arms. I told my Doctor what it was but it took some great pushing by a few Angels to get me diagnosed quickly and then financial help with PIP and other assistance. The MND society was a help in quick diagnosis . I suggest you copy and paste your above post into introductions for more replies and advice.. Take care I wish you both for miracles. TANDB

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  • Terry
    replied
    Hi David and welcome to the forum,

    Sorry to hear about your wife and the callas way in which you both informed.

    Good to hear that you have had reasonable service since then and sometimes you have to chase up things.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry

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  • Ellie
    replied
    Welcome to the Forum David and sorry about your wife's diagnosis. I am sorry too the diagnosis was delivered in such a crass, off-hand manner - just despicable.

    If an orthotic would allow her to walk safely without the risk of falling, then maybe attend the appointment? Orthotics can range from simple lace attachments to bespoke products, which may take weeks to make & deliver.

    At this stage, safety is very important and your wife should avoid further falls if at all possible - does she use a rollator to walk when not using the wheelchair?

    Love Ellie.

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  • Guest's Avatar
    Guest replied
    Hi, my wife was scuffing her foot and having trouble gripping things,she didn't take much notice of the odd times that she tripped, we thought repetative strain may have been the cause of her grip, 12 months or so later, after a few tests she was sent to see a doctor from Walton, we were not in his office ten mins, he came straight out with "you have motor neurone disease", he was really sorry and said i'll see you again in 6 months, we came out being left high and dry, not knowing who to turn to, after a month or so having had an emg it was confirmed as mnd, my wife is going down rapidly and cannot do anything for herself, I dress, feed, wash her, this has happen in such a short space of time Diagnosed in july this year to being in a wheel chair, we are still trying to get our heads around it all, as regards needing things, we have been supplied with everything we have asked for, even a hospital bed, the only let down is the nhs on suppling something from orthotics to help her stop scuffing, its still not appeared, but as my wife is now mainly in a wheel chair,its hardly worth going for the app next week. rant over.

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  • Ellie
    replied
    Originally posted by broken_nails View Post
    Ok so I got letter from hospital finally. Now she has writen things I did not say in the letter what can I do about this I do not trust this woman who during consultation told me not to call fasciculations, fasiculations but "twitches" ?

    The definition of a Fasciculation is "muscular twitching", so there is nothing wrong with what your Neuro said.

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  • Guest's Avatar
    Guest replied
    Thanks

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  • MNDConnect
    replied
    Dear Broken_Nails,

    If you feel the letter you have received from the Consultant at the hospital did not reflect accurately the discussion you had or the comments made, you can write a letter of complaint to your local PALS team who will have to look into this for you.

    As you are unhappy with the Consultant and do not have confidence in her, you have the right to ask your GP to refer you to a different neurologist for follow on appointments.

    With kind regards
    Jacqui
    Senior MND Connect Adviser

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  • Barry52
    replied
    Hi BN,

    Yet again another example of how little many health professionals understand MND. I would try to get a name and make a formal complaint. How ridiculous it is to refer to fasciculations as twitches.

    Best wishes,
    Barry

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  • Guest's Avatar
    Guest replied
    Ok so I got letter from hospital finally. Now she has writen things I did not say in the letter what can I do about this I do not trust this woman who during consultation told me not to call fasciculations, fasiculations but "twitches" ?

    Leave a comment:


  • MNDConnect
    replied
    Hi there
    I am sorry that it has been more than a month since you saw a neurologist, and that you only have the named satellite clinic where you were seen. If the letter has a telephone number for the satellite clinic, it may be that if you contact them they can give you the name of the neurologist who saw you, and the contact details for the relevant secretary.
    Alternatively your GP should have received a letter from the neurologist, and could perhaps enquire on your behalf regarding progress on your diagnosis?
    I do hope that this is helpful.
    Please do contact us again for information and support. we will be pleased to hear from you.
    Jane. mndconnect

    Leave a comment:

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