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Thread: Awaiting diagnosis

  1. #1
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    Awaiting diagnosis

    Hi everyone.
    My husband has had arthritis in his left leg for many years. Before Christmas his mobility was greatly reduced, resulting in him holding on to furniture/walls within the house and unable to mobilise very far outside of the home. Following a consultation with his orthopaedic consultant, and a review of xrays the consultant saw no change or deterioration in his hip due to arthritis, rather he found over brisk reflexes and muscle wastage indicative of something neurological. At this stage referral was sent for MRI. Since Christmas my husband has had tremor in right arm, difficulty gripping with right hand, a lot of weight loss. Currently 8 stone 4lb, height 5 foot 9 . He has a great appetite and eats high calorific foods but continues to loose weight.He has had his MRI and has been waiting 3 weeks now for results. Itís such a stressful time. He is a very positive person and will not even discuss the possibility of any diagnosis which is good for his state of mind. I on the other hand am a nurse and no matter how many times I try to dismiss MND from my mind it keeps popping back!
    Family and friends donít seem to understand. My husband is very good at hiding his illness eg if friends call to the house he doesnít get up from the chair he is sitting in, he doesnít accept a cup of tea ( he would spill it around himself). They then go away thinking he is fine and Iím left feeling as if Iím over reacting . Everyone seems to be burying their head in the sand. My husband is 55 , Iím 45 and we have 2 children, a boy aged 20 and a girl 16.
    I have been reading through posts on here and I am so sorry so many people are going through this journey but it seems a very helpful and supportive group which I hope to benefit from. Thanks to anyone for taking the time to read my post.
    Kittymcb

  2. #2
    Welcome Kitty!

    And thanks for posting about your situation.

    It's absolutely understandable that you're very worried. The uncertainty while awaiting results and diagnosis is really hard to cope with.

    No matter what the outcome, this is exactly the place to find help and support ...... and a big hug!

    Keep in touch.

    Doug

  3. #3
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    Doug,
    Thankyou for reply. Yes here seems to be a supportive safe place and i‘m glad I’ve found it.
    Thanks for the much needed big hug
    Kittymcb

  4. #4
    Forum Member Terry's Avatar
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    Hi Kittymcb and welcome to the forum;

    Going through the diagnoses stage is very worrying and normally long winded. I hope that they find it's something else and not Mnd.

    Please feel free to ask any questions or just share things 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.

  5. #5
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    Terry,
    Thankyou for reply and support. I will be asking plenty of questions throughout the diagnosis process. Again thanks for taking time to read/reply
    Kittymcb

  6. #6
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    Hi Kitty and a warm welcome. I am obviously very sorry you need to be here but it is a really good place for friendship and support .

    Waiting for results and test results is so stressful and causes such anxiety. You're probably both so up and down, it's really hard not to use google and as a nurse you probably fear the worst. I really hope you get some positive answers and support soon.

    I can identify with your husband because I used to try and hide my symptoms and stay sitting when people called.. possibly because there was no answers to their questions.

    Sending both of you hugs,
    Love Debbie x

  7. #7
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    Debbie,
    Thank you for your response. Yes I feel you are right. If my husband had a diagnosis then he would be more able to explain reasons for his current problems/issues. He would benefit greatly from a wheelchair and some OT input into the home but is resisting all of this at present. Again probably waiting on a diagnosis to justify any supports. I can fully understand this but it’s very difficult to watch but I must put his needs first at the minute and respect his wishes/decisions. Hopefully things will be clearer soon.
    Again thankyou for reply.
    Kittymcb

  8. #8
    Forum Member Ellie's Avatar
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    Hi Kitty & welcome.

    Sorry for what you're both going through - am sure hubby is worried despite his cool exterior...

    Did the Neuro give any feedback during the clinical exam as to what it might be?

    The thing which doesn't really make sense is the big weight loss, given he is not eating less and having higher fat content foods at that. I know you say he has some atrophy, but that wouldn't account for such dramatic weight loss, would it?

    Is anyone concerned that he is < 53kgs?

    Hopefully he won't have to wait much longer for the MRI results. When is his next Neurology appt?

    There are other possibilities apart from an MND - let's hope it's a treatable illness...

    Big hug to you both.

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

  9. #9
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    Welcome Kitttymcb. Hope you get some answers soon x

  10. #10
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    Kitty,
    Make sure you look after yourself too! I understand how hard it must be to watch your husband struggling and to have no answers as to why.

    In a strange way it was almost a relief for me to have everyone's suspicions confirmed and be diagnosed because we had OT and physio support to make the home easier and more importantly, safer. Using a wheelchair gave me much more freedom to be out and about and I stopped struggling to walk.

    However, fingers crossed ( and everything else ) for you that it is not MND as there are treatable conditions that have similar symptoms. The waiting period is so hard !

    Love Debbie x

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