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Awaiting firm diagnosis

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  • Ellie
    replied
    Originally posted by TinyLady View Post
    I feel better now it is in the open and we can all talk about it.
    And you know what.... Life goes on, you're still the same person. Kids adapt, you adapt.

    My own two are now 18 and 20 - honesty and openess, as well as much love and laughter, has served us well. xx

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  • TinyLady
    replied
    Yes Linda, it was hard to know how/ when to tell them. But I'm already struggling and they have been worried for over a year watching me get worse. Also with all the appointments it was obvious things were happening. I feel better now it is in the open and we can all talk about it. Been lots of tears today xx

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  • LindaB
    replied
    TinyLady thats a tough day you've had💙💙

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  • TinyLady
    replied
    Sorry, not sure how to tag people to answer specific questions!

    Yes, Physiotherapist requested GP referred me to neurologist. But they really didn't listen and due to covid kept their distance...

    I saw Prof Turner and tests booked for end of the month and seeing him again end of January. He said it is a working diagnosis and nothing else considered so told my GP to go ahead as though a firm diagnosis. But feels a bit uncertain still. Probably because of how badly I was treated (local neurologist told me the wasting was my age! I felt like I was going mad).

    Yes, severe foot drop on left and left leg generally a bit weak and wasted, likes a good twitch too.

    Left hand lost all grip and dexterity - can't even pick up a piece of paper. Arm is not great either, so washing and dressing a challenge. I think the slurred speech upsets me most though.

    Generally just exhausted all the time.

    Thank you for the warm welcome. It is really helping me feel more calm inside. Had to tell my teenage daughters today

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  • Doug Carpenter
    replied
    Welcome TinyLady.

    Presumably, at Oxford, you saw Prof Turner or Prof Talbot. The neurosciences department there is world class. You will receive the best of care .

    Hugs

    Doug

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  • Ellie
    replied
    Hi TinyLady

    Originally posted by TinyLady View Post
    I saw a Physiotherapist who referred me to a neurologist who diagnosed Functional Neurological Disorder before even examining me.
    Well, I live and learn 😁 I never knew a Physiotherapist could make referrals to Consultants - was it a hospital Physio? Was the Neuro legit, not a Quack they sound like? 😏

    Originally posted by TinyLady View Post
    my foot and leg had wasted and my left hand was getting weaker.
    Have you lost any function or dexterity?

    When are your tests? xx



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  • Gordan1111
    replied
    Welcome TinyLady xx

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  • matthew55
    replied
    Hi TinyLady diagnosis is so difficult for what we have, and I pray you won't be diagnosed with what we have. Whatever the outcome welcome to our family. 👨‍👩‍👦💐😁🤗xx

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  • Zante
    replied
    TinyLady welcome to the forum. I echo the words above in that the process you have been through sounds awful. I really do hope you have help and an appointment very soon. Hopefully they will have you in for the various tests as soon as possible. Thinking of u x

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  • TinyLady
    replied
    Thank you for the welcome. I'm popping in and out and reading a few posts. So much I can relate to, which is strangely reassuring.
    Off to a "happy cafe" this afternoon - sounds mildy concerning, but got to keep an open mind...

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  • PeterPan
    replied
    TinyLady Welcome, we really appreciate a wicked sense of humour here! It sounds as if your journey so far has been a bit bumpy and hope you get some certainty soon.

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  • keno
    replied
    I was initially diagnosed as MG but later MND
    Welcome

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  • Lynne K
    replied
    TinyLady welcome to forums. Sorry for your scary symptoms and good luck for receiving a definite diagnosis soon so that you can receive appropriate treatment and support. Love Lynne x

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  • TinyLady
    replied
    Thank you, the sense of humour has got me this far. Not sure I am entitled to much support before diagnosis, but I have a social prescriber who is desperately trying to help me access some. It is hard because I can no longer speak on the phone or type with both hands - so everything takes so long and I have to ask others to make phone calls for me.

    But I'm sure you all know all about these frustrations!

    Just out of the shower and resting before the one handed deodorant application farce begins. Might be easier to stink...

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  • LindaB
    replied
    TinyLady welcome to the forum. Other forum members will tell you MND is often misdiagnosed. Your experience so far sounds awful & it's that period of not knowing that's so tough.
    Even before I had my diagnosis confirmed I had support from my Community Neuro Rehab Team....not sure if this is available in all areas of the country. Worth maybe talking to your GP or the team at MNDA...
    Good luck and keep posting. A wicked sense of humour helps 🙏xx

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