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Thread: Hospital Appointments

  1. #81
    Forum Member Ellie's Avatar
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    Sage, you can also type on Skype, or if Mrs B is on hand, she can help you out it you get tired. Of all people, they'll understand just how challenging talking is, so don't fret...

    Wishing you the very best,
    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  2. #82
    Forum Member ccinjersey's Avatar
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    All the best to you Barry with the Skype consultation, yes please keep us informed of how it goes.

    xox
    Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things lawful for itself, and all things possible.

  3. #83
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Barry52 View Post
    Hi Charles,

    I was registered with ALS worldwide back in May but I wanted to wait until I'd had a discussion with my consultant first. I was asked by ALS worldwide to arrange a Skype call for a 45 minute consultation ( that may be a challenge) and this is due to take place on Monday next.

    CC and Dr. Ellie have answered your other questions but I will report back next week.

    Best wishes,
    Barry
    Hi Barry,

    May I ask how you got on?

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #84
    Forum Member Barry52's Avatar
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    Hi Ellie,

    A good Skype call with the director of ALS worldwide although communication was patchy since the call was in the evening due to US time difference and my voice is poor late in the day. I listened a lot and we decided to trial neudexta for 2 months. I received the drug earlier this week and started today with 1 capsule, increasing to 2 after one week. I hope to see an improvement in my speech and if not I will stop after 2 months. By the time I paid for the drug, shipping cost and UK vat it is not a cheap solution at 85 per month but if it improves my speech and there are no side effects it is a price I am willing to pay.

    I won't feed back on the result until mid November.

    Barry x
    Life is a journey, not a destination.

  5. #85
    Forum Member ccinjersey's Avatar
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    Good luck Barry keeping everything crossed for you that you will notice improvements.

    The drug is advertised here for emotional liability, if it helps with speech and you have no side effects would agree its worth the cost. Unfortunately with most drugs come along side effects, but everyone is different, and I sincerely hope you experience none, and only the benefits of the medication.

    xox
    Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things lawful for itself, and all things possible.

  6. #86
    Forum Member Ellie's Avatar
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    Hope you get good results from it Barry. x
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  7. #87
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    Barry:

    I am setting up a Skype interview.
    My speech goes haywire under emotional duress: when excited, making a joke, upset. So the 'lability' affects my speech.
    I am hoping that by controlling the labile affect it will improve my speech.

    Charles

  8. #88
    Forum Member Ellie's Avatar
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    Charles, Skype has a typing facility too, if it gets difficult. x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  9. #89
    Forum Member ccinjersey's Avatar
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    Wishing you the very best as well Charles.

    If you and Barry are both trying this medication around the same time it would be very interesting to see what type of results you are both experiencing.

    If anyone here decides to look at the ALS Worldwide site you will see they can offer help with other needs besides medications that your NHS might not be able to help out with. Again, just another resource to tap into

    Please keep us updated Charles

    Good Luck xox
    Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things lawful for itself, and all things possible.

  10. #90
    Forum Member Barry52's Avatar
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    Good luck with the Skype interview Charles. Let us know how you get on.

    Barry
    Life is a journey, not a destination.

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