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  1. Replies
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    Oh, I'm glad you'll be linked into your hospice,...

    Oh, I'm glad you'll be linked into your hospice, they have great knowledge and resources - hopefully you'll even be offered a massage or other complementary therapy.

    Love Ellie.
  2. Thread: So tired

    by Ellie
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    1,279

    Thanks for the update Sarah. Good to hear...

    Thanks for the update Sarah.

    Good to hear you're finally sleeping better and getting stronger and also people are keeping an eye on you!

    I am good, thanks for asking. There are signs of spring...
  3. Thread: So tired

    by Ellie
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    1,279

    Oh Terry, it breaks my heart that your back is so...

    Oh Terry, it breaks my heart that your back is so painful :(

    I hope you don't have to wait long for the physio and that, when you do get there, he/she knows what they're doing !!!

    Don't forget...
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    Hi Jacqui, Sorry to have to meet you in such...

    Hi Jacqui,

    Sorry to have to meet you in such circumstances but a warm welcome to the Forum.

    Yes, it is a difficult emotional rollercaster and it can be one long ride during which we all yell,...
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    There is no issue re the fact 'only' 2 limbs were...

    There is no issue re the fact 'only' 2 limbs were tested - both limbs were symptomatic and would have shown abnormalties. In fact one limb would have been enough to test, but the Neurophysiologist...
  6. Thread: London Eye

    by Ellie
    Replies
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    Welcome to the Forum, UTB and thanks for your...

    Welcome to the Forum, UTB and thanks for your informative post.

    Love Ellie.
  7. Thread: So tired

    by Ellie
    Replies
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    1,279

    How is the back pain Terry, easing somewhat or as...

    How is the back pain Terry, easing somewhat or as bad as ever?

    Love Ellie.
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    Hi Sesa, Because there is no single test to...

    Hi Sesa,

    Because there is no single test to diagnose MND, the diagnosis is only made if there is clear evidence of clinical weakness in association with other clinically evaluated symptoms and...
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    Welcome to the Forum, Janette. I see Terry has...

    Welcome to the Forum, Janette.

    I see Terry has lectured you already about eating safely, so I won't have to :D:D

    I still eat what I can safely enjoy and use my feeding tube for my main...
  10. Thread: inbox

    by Ellie
    Replies
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    If you're replying back and forth in the same PM,...

    If you're replying back and forth in the same PM, usually you need only keep the latest 'Sent' version.

    Messages have stored history - to see it click on 'View History' under the text box. See...
  11. Thread: Private messages

    by Ellie
    Replies
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    424

    If you're replying back and forth in the same PM,...

    If you're replying back and forth in the same PM, usually you need only keep the latest 'Sent' version.

    Messages have stored history - to see it click on 'View History' under the text box. See...
  12. Thread: So tired

    by Ellie
    Replies
    23
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    1,279

    On the ball Hayls !!

    On the ball Hayls !!
  13. Thread: Terrified

    by Ellie
    Replies
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    734

    Hi Kelly. Sorry to hear about your symptoms. ...

    Hi Kelly.

    Sorry to hear about your symptoms.

    How is your manual dexterity - opening buttons, plaiting hair etc?

    Does your wrist/arm/hand hurt if lifting a pan or child etc?

    Best wishes...
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    You must have been on tenterhooks last night,...

    You must have been on tenterhooks last night, Lynne - they left it late to score the winner :rolleyes: I don't think you'd have been mighty happy with a draw (against Wolves!!)

    I don't really...
  15. Thread: So tired

    by Ellie
    Replies
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    1,279

    Hi Hayls, It sounds as if you maybe should...

    Hi Hayls,

    It sounds as if you maybe should have an overnight pulse oximetry test too.

    If you don't know what it is, it's a fingertip monitor which measures your oxygen sats (SpO2) during the...
  16. Thread: So tired

    by Ellie
    Replies
    23
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    1,279

    That way you will know what you're dealing with...

    That way you will know what you're dealing with at least and, if necessary, you can start NIV to give you some extra power in your battery pack :)

    Even though I know you've other things on your...
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    Oh Lynne, you've been hanging around with Barry...

    Oh Lynne, you've been hanging around with Barry for too long ;):D:D

    Enjoy the game.

    Love Ellie.
  18. Thread: So tired

    by Ellie
    Replies
    23
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    1,279

    Would you think of wearing an overnight Sats...

    Would you think of wearing an overnight Sats monitor ?

    I doubt you'd go in for a sleep study, I know I'd need to be physically dragged into a hospital to do one at this stage :) xx
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    Sorry to hear about your fall, Lynne. It sounded...

    Sorry to hear about your fall, Lynne. It sounded scary but you managed not to panic much - good on you. Of course a fall will knock your confidence and you don't need that....

    Yes, I also...
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    Chrissie, who is your Gran's next of kin? ...

    Chrissie, who is your Gran's next of kin?

    Hope you manage to get some sleep later.

    Love Ellie.
  21. Thread: So tired

    by Ellie
    Replies
    23
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    1,279

    Oh Sarah, you must be sooo fed up with diarrhoea...

    Oh Sarah, you must be sooo fed up with diarrhoea at this stage :(

    I'm sorry those tests all drew a blank, that is frustrating. Any idea if your gut biome was tested?

    You might find this...
  22. Thread: So tired

    by Ellie
    Replies
    23
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    1,279

    Hey TC, great to hear you had a good day...

    Hey TC, great to hear you had a good day yesterday - hoping you go from strength to strength from now on and get back to where (-ish) you were before the virus hit.

    Do you think your breathing...
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    It is a randomised, double blind trial, so the...

    It is a randomised, double blind trial, so the fact that some people will be or won't be or maybe will stop or start taking another glutamatergic drug (riluzole) during the memantine trial, seems odd...
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    Yes people can continue taking Riluzole if also...

    Yes people can continue taking Riluzole if also taking Memantine, but not everyone takes Riluzole.

    So, if some in the Memantine trial cohort take it, andothers don't, given its similar...
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    No Kayleigh, your post didn't confuse anything,...

    No Kayleigh, your post didn't confuse anything, don't worry - I was aware Memantine mops up glutamate.

    My 'confusion' stems from fact that, in a randomised, double blind trial, there seems to be...
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