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Thread: Flail arm

  1. #11
    Forum Member
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    Feb 2018
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    My husband has flail arm MND. It started with fasciculations in his arms and then his right arm lost strength - he was struggling to lift it etc and then in December 2016 he was carrying 2 drinks at a party and nearly dropped one as his right arm wasn't working properly. It gradually got worse, his neurologist tried a couple of treatments for various possible diseases but none worked. He had to stop work and driving in June 2017 (was a bricklayer) and got diagnosed in October 2017 at the National Neurology Hospital in Queens Square. He gradually gets worse and now he is virtually paralysed. Apparently flail arm can have a slower disease progress than other versions of MND. His MND specialist said that this is not always the case and I suspect he knew Tony was a faster progression. Hopefully your progress will be slower. We have lots of input from occupational therapy, physios, speech and language etc and they all make things easier. Take care

  2. #12
    Forum Member Sueb's Avatar
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    Aug 2014
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    My Husband, Steve, was diagnosed with flail arm als in July 2014. He had been having problems with his hands for a few years and was diagnosed with carpal tunnel in both hands. Then in 2013 he had a rotator cuff injury repaired and his arm didn’t get any better. At the same time he had his carpal tunnel repaired on both hands. Again they didn’t get any better and his physio said there was something else going on and didn’t think he had carpal tunnel. He was finally diagnosed with flail arm ALS. The neurologist said it could stay in his arms or progress through his body which it did. He now cannot move his arms, hands or legs and his swallow is now affected and he has a feeding tube..

    Sue

  3. #13
    Hi everyone can anybody tell me if creatine and whey help with the symptoms of mind please

  4. #14
    Forum Member Ellie's Avatar
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    Oct 2012
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    What symptoms are you trying to alleviate?
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Hi Ellie ..basically just try and slow down the progress of flail arm. I have mixed results as some info on internet states creatine does help but spoke to my neurologist
    and he said it doesnt

  6. #16
    And also to try an get some strength an energy back as I have flail arm .I am taking vitb12 Deanna protocol vit d and cbd oil. I am a smoker an finding it hard to even think about giving it up an i have 4 cans of carling lager each night. Does anyone know if any of these especially smoking an drinking will make mnd progress quicker . I am also taking valium

  7. #17
    Forum Member Ellie's Avatar
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    Oct 2012
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    Sorry, I thought you were talking about cramps or spasms etc.

    I agree with your Neuro that neither whey nor creatine will help. MND is not a muscle disease, but one which stops signals getting to the muscles in the first place.

    Many people have great things to say about CBD oil.

    As long as your breathing isn't too compromised or, if it is, the dose is small and you use NIV, Valium (diazepam) should be OK if your Dr prescribes it.

    Smoking & drinking - honestly, at this stage, if they make you a Happy Chappy, why stop now after the horse has bolted, so to speak. Stopping smoking will probably cause you much stress, which can affect progression.

    Keep doing your research on supplements - check out Theracurmin if it's not in your regimen already.

    Good luck.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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