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  1. Replies
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    Just re EMG: it doesn't matter that your neck...

    Just re EMG: it doesn't matter that your neck muscles weren't tested. Neuronal damage would be widespread and would be very apparent on the EMG.
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    Do you know the settings they've set the Nippy...

    Do you know the settings they've set the Nippy at? IPAP & EPAP.
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    Douglas, can I just check please, it's just room...

    Douglas, can I just check please, it's just room air you're breathing, is it? No added oxygen?

    Love Ellie.
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    It's really important to have an MRI which will...

    It's really important to have an MRI which will check for spinal compressions etc. and I am very surprised one wasn't done, given your symptoms. Did you have nerve conduction studies (NCS) as well...
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    Hi Diamond, Your symptoms sound nothing like...

    Hi Diamond,

    Your symptoms sound nothing like MND symptoms - I can't really see where the possibility of it being an MND came from.

    I hope you soon find out what is causing your symptoms and,...
  6. Thread: tandem jump

    by Ellie
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    Ah Maz, that was lovely !! Pete is a very...

    Ah Maz, that was lovely !! Pete is a very special man, you're a lucky lady having him by your side.

    I can't have been the only one to choke up when I heard your song...

    If anyone wants to hear...
  7. Thread: NurOwn

    by Ellie
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    There is a Right-To-Try law in the U.S. Andy...

    There is a Right-To-Try law in the U.S. Andy which allows for people with a terminal illness to try non-FDA approved drugs, once they've undergone Phase 1 Clinical Testing.

    AFAIK, Brainstorm, who...
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    Yes Andy, settings are key to using NIV...

    Yes Andy, settings are key to using NIV successfully !!

    With the optimal settings, you shouldn't feel any forced breathing - just that the machine is in sync with your breathing pattern, which...
  9. Thread: hi

    by Ellie
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    I know Maz, there are no words to describe how...

    I know Maz, there are no words to describe how we feel about our failing bodies. It takes every bit of our strength and resilience to cope with this disease.

    You're the same person inside, that...
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    Did the Neuro replicate the clonus in exam? ...

    Did the Neuro replicate the clonus in exam?

    Yeah, they are all upper motor neuron signs but don't necessarily mean you have an MND - and to be diagnosed with ALS, you need lower motor neuron...
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    It really should've been on Pressure Support from...

    It really should've been on Pressure Support from Day 1 :mad:

    You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel...
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    Hi Glos, Your symptoms don't really fit ALS as...

    Hi Glos,

    Your symptoms don't really fit ALS as you don't appear to have lower motor neuron signs and had normal EMG.

    Were the spasticity, Hoffman's & Babinski the only clinical signs the Neuro...
  13. Thread: hi

    by Ellie
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    Ooh Maz, stardom and fame :D If you don't want to...

    Ooh Maz, stardom and fame :D If you don't want to sit in your wheelchair, can you sit in an armchair?

    Re icy lower limbs - even in summer my knees, lower legs and feet are icy to the touch! ...
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    Pressure Support mode is best for augmenting...

    Pressure Support mode is best for augmenting breathing in people with respiratory failure due to ALS.

    However, I don't know your sleep study results Douglas and, if your Nippy is in Pressure...
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    Hi Vix and a warm welcome to you both. Sorry...

    Hi Vix and a warm welcome to you both.

    Sorry you’ve had to join us and I know how difficult it is to make that first post - it makes it so awfully real :(

    Your husband does seem to be a...
  16. Thread: Falling !

    by Ellie
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    Oh no Debbie, commiserations to you. It must...

    Oh no Debbie, commiserations to you. It must have been a frightening experience for you both.

    I’m glad you were well looked after and how lucky are you to have such a fabulous GP!!

    Do you...
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    Hi Andy, At least 4 Neurologists have examined...

    Hi Andy,

    At least 4 Neurologists have examined you and told you that you do not have ALS/MND.

    You have had multiple EMGs, none of which showed problems suggestive of ALS/MND.

    You said...
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    Hi Vicky, Do you mean your dad has difficulty...

    Hi Vicky,

    Do you mean your dad has difficulty pressing the actual switch or is it that he presses the switch and can't get further in that app?

    If it's the former, would it be easier to use a...
  19. Thread: Clothing?

    by Ellie
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    Hi Vicky, Maybe Dropfront Trousers might suit...

    Hi Vicky,

    Maybe Dropfront Trousers might suit him?

    Take a look at these and scroll down for the short video: https://www.able2wear.co.uk/dropfront-wheelchair-chino-trousers.html

    Or...
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    It's certainly turning into a saga Douglas, I'm...

    It's certainly turning into a saga Douglas, I'm sorry.

    Hope the sleep study gives relevant information on what's happening during your nocturnal breathing - be it apnoeas, actual BPM (breaths per...
  21. Thread: tandem jump

    by Ellie
    Replies
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    Good for you Maz. YOLO :D:D Glad to hear...

    Good for you Maz. YOLO :D:D

    Glad to hear the MNDA has been good to you.

    Feel free to post your Just Giving page link either by editing your original post or putting it in a new post.

    And...
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    Surely they can take blood from an artery if they...

    Surely they can take blood from an artery if they had such difficulty taking blood from your earlobe?

    If done by an experienced hand, it isn't a painful thing - I've had a few done - and it...
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    I am sorry your outing was ruined by such an...

    I am sorry your outing was ruined by such an ignorant and selfish driver :mad:

    The fact that the parked car is on a pavement and is causing an obstruction to a wheelchair user should incur a...
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    That's good to hear Douglas - the CO2 level is...

    That's good to hear Douglas - the CO2 level is heading in the right direction.

    Enjoy your TV !!

    Love Ellie.
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    700ml sounds right for your target...

    700ml sounds right for your target weight/previous weight of 98kg, so your settings may need more tweaking.

    That alarm can be muted btw...

    Hope tonight is a good one!

    Love Ellie.
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