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Thread: Awaiting diagnosis

  1. #11
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    Debbie,
    I’m glad to hear that since diagnosis you have gottten the support you need. I’m just so sorry that you have been diagnosed. Yes the waiting is so hard. On one hand I don’t want a diagnosis but on the other hand at least we would know what we are facing and can be more proactive. I’m glad I have found this forum just to chat and to know there are many people in the same position as myself and my husband. Thanks again for reply
    Kittymcb

  2. #12
    Forum Member Kayleigh's Avatar
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    Hi Kitty,

    Sorry to hear about your husband being unwell. Understandably, the uncertainty about what is causing his symptoms must be worrying for you both. Hopefully it will not be MND, and you will soon get support from an OT etc, whatever your husband's diagnosis is.

    It sounds like your husband might be resistant about using a wheelchair (I think that his GP would be able to refer him to your local wheelchair services) - but perhaps he might be open to the idea of borrowing a wheelchair from the Red Cross, on a short term basis to aid his mobility at hospital appointments etc:-

    https://www.redcross.org.uk/get-help...w-a-wheelchair

    It can't be easy for you, if you don't have anyone to discuss all your worries with. Please feel welcome to ask any questions and return to this forum as often as you like.

    The MND Connect helpline is also available, if you would like someone friendly and understanding to talk to.

    Love and best wishes,
    Kayleigh xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #13
    Forum Member Lynne K's Avatar
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    Hi Kittymcb. Very sorry to hear about your husbands symptoms and that you are both awaiting his diagnosis. Being a nurse will be of some benefit to him but I feel that it'll still be hard for you whatever he's diagnosed with. I hope that a diagnosis comes quickly so that your husband will get all the help and services that he needs, especially a walking aid and/or wheelchair.

    I tend to sit when friends are here. That's mostly because I don't want to scare them and have to deal with questions and sympathy.

    Don't forget to look after yourself. Take care, Lynne x
    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.

  4. #14
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    Hi Ellie
    Thank you for response. We first saw GP after 3 weeks of attempting to get an appointment ( week after Christmas) she referred him to his orthopaedic consultant who referred him for an MRI. He felt symptoms such as brisk reflexes, muscle cramp, reduced mobility and tremor were neurological. He also said he would refer him to an neurologist which he has informed me has been done. 3 weeks ago on Friday he had his MRI. He has not been even seen yet by an neurologist. No one seems concerned about any of it never mind his weight loss! Iím at my wits end but my husband doesnít like a fuss or perhaps has fears of what lies ahead. He wants to just wait and see what results come from MRI. Regardless of what results are I know my husband is very ill.. I think we have a long road ahead before we get any answers.
    Thank you for your support
    Kitty

  5. #15
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    Hi Lynne.
    Thank you for your response. Everyone here has their own worries and I appreciate all the kindness that has been shown to me today
    Thank you so much.
    Kitty x

  6. #16
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    Kayleigh,
    Thank you so much for your kind words. Yes I’m currently using my powers of persuasion about ‘ borrowing ‘ a wheelchair short term just for hospital appointments. Keeping it in the boot of the car and gradually introducing it to go into shop. At present he can’t even make it around a shop. Has always used a stick for his arthritis which he still uses now but it doesn’t provide enough support. Needs assistance linking into my arm but really can only manage a few shuffles.
    Thanks for reply and I appreciate all support
    Kitty x

  7. #17
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    Shrew,
    Thanks
    Kitty x

  8. #18
    Forum Member Ellie's Avatar
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    Kitty, I'm sorry you're both left hanging, so to speak.

    Because hubby isn't "under anyone" at the moment, nobody has an overview of what's going on, which kind of worries me, vis-a-vis the unsustainable weight loss.

    Any point in getting a GP appt? You'd know if there'd be any merit in that or if you'd just be fobbed off.

    Anyway, hope hospital appts happen very soon - having an appt in the diary should help as a first step, uncertainty is the worst thing.

    Hang in there!

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

  9. #19
    Forum Member Terry's Avatar
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    Hi Kittymcb,

    If his lost lots of weight he should be referred to a dietitian and to be prescribed drinks like Fortisip that contain the necessary things needed, his doctor should have done that already if he can't eat so well.

    Just because he doesn't have a diagnosis does not mean that he should not get use of the services, so he needs a urgent referral to the wheelchair services, dietitian and a OT, to get the equipment and help he needs.

    I have been going to a local hospice for years and it would be good to refer him there, as they have a separate lot of specialists that help him live life better.

    Love Terry

  10. #20
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    Hi Ellie,
    Thanks. Yes this appears to be the problem. There is no one looking after him. GP is useless if you can even get an appointment! Yes hopefully get assigned a neurologist soon and the process can begin
    Thanks
    Kitty x

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