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Possible MND diagnosis

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  • Barry52
    Hi Fiona89,

    I’m sorry to hear about your your partner. If the diagnosis is confirmed as familial MND then he will be offered a support team to manage the symptoms.

    Best wishes,

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  • Fiona89
    Thank you.

    I guess we were a little shocked that she went straight for the possibility of MND as he’s so young and he has such a variety of symptoms. Probably wishful thinking on our part that she’d suggest something else!

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  • MNDConnect
    Dear Fiona,

    I am very sorry to hear that your partner is displaying symptoms that are causing you to be concerned they could be due to Motor Neurone Disease.

    Given his family history this must have been at the forefront of his mind when he went to his GP appointment, and then having the GP voice her concerns as well must have been very distressing for him.

    As the GP seemed aware of your partners family history you would have expected that she would have asked if he would like a referral to a counsellor. However she may also want to be sure that your partners symptoms are not due to another cause before acting as if the diagnosis was a forgone conclusion.

    If you partner is not confident that he will receive empathetic and caring support through the diagnostic progress and beyond then maybe he could ask to see a different GP at his next appointment.

    It is really crucial that the GP provides consistent support especially if your partners is diagnosed in the future with MND as the GP is a pivotal support mechanism for anyone with MND, although unfortunately not every GP provides this essential support.

    If you or your partner would like to talk about your concerns please do call us on the helpline, we are here for anyone affected by MND. Our number is 0808 802 6262

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser

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  • Fiona89
    started a topic Possible MND diagnosis

    Possible MND diagnosis


    My partner is 29 and his father was diagnosed with MND 3 years ago, 2 other members of his family have passed away due to MND, and we’ve been told by a specialist that this is more than likely a genetic form of MND.

    About 6 months ago, my partner began feeling stiffness in his right hand. He also had some numbness, tingling and swelling, his GP didn’t know what was causing it and referred him to a muscle specialist.

    Since then he’s also been suffering from an aching jaw, neck and tongue, as well as a stiff/weak feeling in his right ankle. We’ve also noticed some muscle atrophy on the back of his right hand.

    The muscle specialist suspected a trapped nerve in his neck and sent him for an mri scan.

    He’s been back to the GP today to ask about his neck ache as it’s getting worse and he mentioned MND. She gave a very brief statement that yes she’d thought of that first time she’d seen him. But would wait until after the mri results to refer him to a neurologist.

    I feel that this seems such a massive, scary suggestion from the GP but without any sympathy, support, planning. Is this right or should there be more support? Do we change GP?

    I’d welcome any support or advice.

    Thank you,