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Thread: Looking like I知 heading for a diagnosis

  1. #1

    Looking like I知 heading for a diagnosis

    After a long battle with neurologists and coming and going, it looks like I may be headed towards a diagnosis of MND. It was confirmed at my last appointment that I have upper and lower motor neurone signs and evidence of active and chronic denervation on EMG. Currently they want to wait to see clinical evidence of progression so I知 stuck in limbo.

    I知 a 33 yr old mum with a 2 year old son so feeling a lot of emotion, denial, anger etc. Also feeling like I don稚 really have a lot of people to talk to as I don稚 even have a firm diagnosis as of yet. I知 wondering if I should be booking holidays etc?!

    Anyway I wanted to come and say hello to you awesome lot and I may be around a bit more in the future.

    X

  2. #2
    I should say I’ve already had all the MRI scans and about every blood test known to man

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

    Sorry to hear about your situation and we hope it's not Mnd.

    Your emotions and thoughts are very normal when faced with things like that.

    What and when was your first symptom?

    How is it progressed?

    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
    My first symptom was slightly atypical in so far as I was having trouble reaching overhead on one side. This was then followed by easy fatigueability and instability walking. Now I am getting a little slurry when tired and finding it a little tricky to swallow certain things. Still got my fingers crossed for something else. Unfortunately I’m a medic so I’m aware there is not a hell else this can now be......

  5. #5
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    Naturally your feelings are all over the place just now - things do tend to change and settle down. And it's exceptionally hard for a mum with a young child; I am so sorry. There's still a hope it may not be MND but it sounds as if you suspect that's where it's heading. You wrote about a long battle so maybe it's taken a while to get here? If so, there is a chance progression may be relatively slow (though never slow enough). Hang in there for now, get through today and this week, and remember you aren't alone.

  6. #6
    Yes I am lucky/unlucky that I have been dealing with symptoms for around 18months

  7. #7
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    Sorry that you find yourself here, how long are they suggesting you wait?

  8. #8
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    Hello Som, my daughter was diagnosed last year 4 months after having her second child her daughter was 7, we still have not come to terms with this diagnosis. I desperately hope this is not your diagnosis and it turns out to be something else...anything else.

  9. #9
    Forum Member Terry's Avatar
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    Hi Somnambulator;

    If it is Mnd then it is a slow developer. There is quite a bit of info here about easier eating and voice banking, (if you have any time after looking after your 2 year old son) so that it can be use later if needed.

    Love Terry

  10. #10
    Thanks for all the replies!

    Marge they are suggesting I get bulbar function tests immediately as my FVC as measured by my gp is reduced. However neuromuscular Professor was explicit that definite diagnosis requires 3 regions affected. I currently have 2 on examination and EMG.

    Terry thanks for the advice I will definitely have a good look around. Got a lovely fish pie in the oven as we speak (even if it isn’t the weather for it)!

    Jaxx so sorry to hear about your daughter. This disease is devastating enough without children becoming involved. Does she have a good support network?

    In a bittersweet way I’m just so grateful to be able to reach out to others in a supporting environment.

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