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Thread: Paraneoplastic Motor Neurone Disease

  1. #1
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    Paraneoplastic Motor Neurone Disease

    My dad been diagnosed with Paraneoplastic Motor Neurone Disease yesterday following a sudden symptoms in January. Weíve been told he doesnít have long to live and they canít treat.

    The pain Iím experiencing is indescribable. My Dad is only young and a few weeks ago he was fit and healthy.

    Iím also hurting knowing my Dad is being face with his own mortality and heís also scared.

    I just canít believe this is happening. Any advice would be appreciated.

  2. #2
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    I am sorry to hear of your Dads diagnosis and the stress and worries you are going through at this Sad time.I Know how awful the feelings are that you are both going through. I am currently being tested for neurological symptoms and my anxiety is through the roof with all the worries. Even though as of yet I do not have a diagnosis like yourselves. I have a young daughter and all I do is worry about her constantly,probably how your dad is worrying about you now. The emotional pain in relation to any terminal illness is overwhelming and initially what you need as much help with. Sometimes you just need to talk and let your feelings out. From what I have read on here the MND association offer good for support and may be able to advise you of help you may be needing. They have helped me by just talking about my concerns when phoning the help line. There is support out there and I hope you have been and will be advised of support from the team involved in your dads care. However the pain you are feeling is normal and it is important to share how you feel and cry as they are all normal emotions we have to go through.

    Thoughts with you all at this time Daniel
    Last edited by Daniel; 19th March 2019 at 12:44.

  3. #3
    Forum Member Terry's Avatar
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    Hi Sadandscared and welcome to the forum;

    Sorry to hear of your dad's diagnoses yesterday. Your minds must be all over the place.

    I don't know much about Paraneoplastic Motor Neurone Disease but I guess you have googled it.

    What was his first symptoms and how is it affecting him now apart from the mental strain.

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

    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.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Sad and scared and welcome to the Forum.

    Sorry about your dad's diagnosis.

    I am not a carer but can empathise with what you must be going through.

    I know the diagnosis is still very new and you must be in utter turmoil and feeling overwhelmed. A good place to get support for you both is his local hospice so, if he hasn't yet been referred, do ask for a referral. Hospices provide counselling as well as a Day Hospice where your dad could go once a week for nursing care, wellbeing, physiotherapy and see an Occupational Therapist (OT)

    I don't know much about Paraneoplastic MNDs apart from what I've read. Sorry to hear his prognosis is not good. I don't know how your dad was diagnosed or how many Neurologists he saw, but given that his condition is so rare, if the diagnosis wasn't given by a Specialist, you are free to get a 2nd opinion.

    Look after yourself.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
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    so sorry to hear of your Dads diagnosis x

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Sad and Scared. Very sorry to hear about your dad's diagnosis. I don't know anything about that strain of MND. You have already had good advice so all that 8 can offer is hugs being sent over the air waves. 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.

  7. #7
    Forum Member Lynne K's Avatar
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    I just found this explanation. It suggests that this type of MND is treatable with tumour treatment. This if I understood it. I will accept corrections.
    https://www.ncbi.nlm.nih.gov/m/pubmed/29725842/
    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.

  8. #8
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    Thank you all for your supportive words.

    I’m in a very dark place at the moment but your comments bring comfort.

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