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Thread: Has anyone used Edaravone?

  1. #21
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    Well Terry I'm not sure. Its all about money and influence here so family friends who worked in immigration are trying to help. I'm not aware of an appeals process also the consignment is due to be destroyed which negates any chance of a refund.
    I'll keep you posted.
    Best Jerry

  2. #22
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    Hi all, I was very kindly given a prescription/report by a neurologist to allow my Edaravone in the country, however customs still refused due to the 3 month quantity so have returned them to the exporter but will allow me to import 1 months supply. Yes this is Thailand. Have found folk a bit anal where medication is concerned but not just here. I've ordered a new batch so heres hoping.
    Best Jerry

  3. #23
    Forum Member Terry's Avatar
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    Hi Jerry;

    Goodish news. Months meds soon go but keep reordering as soon as possible.

    Love Terry

  4. #24
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    Hi Terry, I've completed by first months course and have received my next months. The foil was to order them in packs of 10 which are being delivered no problem fingers crossed. I am overall feeling pretty well. My wife says I look like my old self though I disagree due to the weight loss and my mobility is still poor. This could also have something to do with the FMT program I completed a couple of months ago.
    Onwards and upwards. Jerry x

  5. #25
    Forum Member Ellie's Avatar
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    Thanks for checking in Jerry.

    Great that you're feeling well, whatever the reason - that's half the battle!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #26
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    Thanks Ellie/Terry, I'm now on my second lot of infusions but as I said I have no idea if they're doing any good. I'm still in fine fettle and get out for a beer in my wife bar a few times a week to also play pool. As a means of exercise I go in the pool but find if I do I'm worn out at the end of the day so I think I've got a certain amount of energy to use whichever way I want. My right to has sort of curled over but Pim has got me a foot glove to go over it with a piece of gel underneath to support the toe. Busy with the voice banking also. My friend has had his nephew out here who has just been diagnosed but is in a much worse state than me. Bloody heartbreaking with a young family.
    Take care love Jerry x

  7. #27
    Forum Member Ellie's Avatar
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    Jerry, we do need more energy, particularly during the stage you're at now, so consider upping your calorie intake.

    Spend your energy wisely - don't sweat the small stuff!! And it sounds like moving back to Thailand was the right decision.

    Sorry about your friend's nephew.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #28
    Forum Member Terry's Avatar
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    Thanks for the update, Jerry;

    Mnd is hard for anyone but as you say with a young family.

    Fingers crossed.

    Love Terry

  9. #29
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    My daughters children are 8 and 16 months it’s heartbreaking for her not to be able to do anything with them are for them!

  10. #30
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    Hi Ellie, I think you're right. My appetite has suffered but I'm taking hi protein drinks as well as 1 liter of veg/fruit liquidised. Need to up things then. Thanks Jerry x

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