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Thread: In denial

  1. #1
    Forum Member Wend's Avatar
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    In denial

    Hi, my name is Wend. I was diagnosed 4 days ago, after 6 months of pursuing other options. My husband has fallen apart. I am alone in La La Land with a bucket full of sand. How am I supposed to accept that 1 EMG and 1 physical exam means that pain in my hips and legs translates as MND? Okay, I also have constant twitching in every muscle, head to toe, but I am really struggling with this.
    Any tips for a road to reality? Ta.
    Last edited by Wend; 5th June 2018 at 16:03.

  2. #2
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    Hi Wend and welcome to this wonderful forum where you will get loads of support. I am very sorry to hear that you have found yourself here so soon. I imagine you got your diagnosis from a specialst MND centre where they are expert at this sort of thing. A diagnosis of MND is not given lightly. Either you've got it or you haven't. Only people who are familiar with this know, including the patients. My husband was diagnosed much the same as you but only in a matter of days. We knew, they knew. It's the supporting EMG that tells all. It will be a rollercoaster of an emotional ride for at least a year or so. I really needed (and still need) the support of everyone here to help me to where I am now, which is in a positive place. We take one day at a time and we do the best we can.
    Loads of best wishes and hugs to you and your husband.
    Fru xx

  3. #3
    Forum Member Ellie's Avatar
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    Hi Wend and sorry to welcome you to the Forum.

    Your diagnosis is very new and raw, so it's normal to be all over the place. It will take weeks of emotional ups and downs before the diagnosis finally sinks in, but you will laugh again!! Life goes on...

    There is support available for both you and your husband through the local MNDA Branch and your local hospice.

    It's true that the vast majority have multiple tests to rule out other likely conditions before the diagnosis of an MND is given - currently it's a diagnosis given by exclusion, in conjunction with EMG results and clinical exams, consistent with MND.

    If you haven't had any other diagnostic testing, and if you're in any doubt re your diagnosis, you can always ask for a 2nd opinion, if even for your peace of mind.

    Love Ellie.
    Last edited by Ellie; 5th June 2018 at 16:39.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Terry's Avatar
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    Hi Wend and welcome to the forum,

    It must be a total shock for you both as you don't seem to have many symptoms. It is quite normal for people's brains to be all over the place for a couple of months after a diagnosis of this type even if they had a iclėng beforehand.

    Hopefully you and your husband can soon get together and talk, perhaps about normal things.

    You will perhaps soon start living life again and not looking to far forward.

    Did they say what type of MND you have?

    How long ago and what were your first symptoms?

    As Ellie says, you can always ask for a second opinion,

    I did even though I was in no doubt about the diagnosis but it was handy as I got a lot more information and another specialist that we got along with.

    Best wishes, Terry
    Last edited by Terry; 5th June 2018 at 16:48.
    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.

  5. #5
    Forum Member Wend's Avatar
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    Thank you Fru, just Thank You ) x

  6. #6
    Forum Member Wend's Avatar
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    Hi Ellie, I have had 3 MRI's to rule out arthritis, rheumatism, muscle problems etc. I know it's real, I just don't know how to accept it, or what I am doing to my family. We will get help - I am just the bolshy one in the corner for now lol! x

  7. #7
    Forum Member Wend's Avatar
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    Thanks Terry, we will get through this - my husband is an amazing man and we talk constantly, it's just early days I guess. I knew something was wrong 6 months ago, it's upper and lower. I like my consultant, and I am seeing him again in a couple of weeks. I struggle to walk and the fasciculations have been constantly for about 6 weeks or so. I plan to be the outwardly strong one. I have started a diary to, as a place I can vent ) Best wishes to you to, thank you ;o)

  8. #8
    Hi Wend

    Welcome to the forum .

    Sorry to hear your news. You and your husband can come together and talk. Don't look to far forward, take each day as it comes. Your emotions will be up and down for awhile.

    You will start to live your life again but it will take time to adjust to your new way of living. I am feeling your pain as I was in denial when I got my diagnosis in August 2008.

    Best Wishes
    Carolx

  9. #9
    Forum Member Ellie's Avatar
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    Wend, have you started taking Riluzole yet? Sometimes it dampens down the fascics - which, ironically, you'll miss when they're gone

    I'm looking right at you from the other corner - bolshiness can be a great attribute to have in dealing with MND, believe me!!

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

  10. #10
    Forum Member Terry's Avatar
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    It's good to hear that you are both on the same page Wend,

    See if you can get an OT to help getting some things to help you keep safe and mobile.

    Ellie mentioned about the hospice and that must be a horrendous idea but they are a great place to help you live life better and they normally have OT s and other people to help you.

    Love Terry

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