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Thread: Russ60

  1. #1
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    Russ60

    Diagnosed 2 months ago but have had illness for over a year. Devastated by diagnosis but was doing ok until a couple of weeks ago. Currently have real problems with food and would appreciate advice. Find that I get incredibly hungry suddenly, grab some food and then spend the next couple of hours with stomach ache, loads of muscle twitching and exhaustion. By the time this finishes itís time to eat again. Driving me a bit mad! Advice welcome.
    Also gets lots of tingling in arms and legs at times - what do you take for this? Thanks.

  2. #2
    Forum Member Gillette's Avatar
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    Hi Russ60

    Welcome to the forum no-one wants to need. Sorry about your diagnosis. Youíve come to the right place for information and support. Sorry I canít help with your questions but Iím sure someone will be able to offer some advice soon.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Terry's Avatar
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    Hi Russ and welcome to the forum;

    I too do gets very hungry and feel weak because of that if I don't eat regularly. You should have a dietitian in your team and if not speak to your doctor about fortified drinks. I normally take a Fortisip drink out with me just incase I don't eat as often as needed. Try to have a little and often if you can.

    I don't think that it's normal for Mnd people to have stomach problems so it could well be something else that is causing it.

    Being tense and overdoing things can make fluctuations worse.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Ellie's Avatar
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    Welcome to the Forum, Russ, sorry you’ve had to join us.

    Quote Originally Posted by Russ60 View Post
    Find that I get incredibly hungry suddenly, grab some food and then spend the next couple of hours with stomach ache, loads of muscle twitching and exhaustion. By the time this finishes it’s time to eat again.

    Hmm, no wonder it’s driving you mad I would mention it to your doctor in case it’s non-MND related, but just a few thoughts…

    MND is demanding on the body, a hungry disease, so you may need to up your calories and eat more often - it’s best to talk to a Dietitian or maybe your MND Nurse. I wonder if you’re building up air/wind in your stomach, giving you the impression of hunger and, when you do eat, it makes it worse? Maybe your posture or mobility has changed or you’ve started new meds - many have GI side effects.

    How is your swallow? Any chance you’re swallowing air?

    Quote Originally Posted by Russ60 View Post
    Also gets lots of tingling in arms and legs at times
    Another strange issue. Tingling isn’t common in MND - is it very different to twitching? Can you describe it and when it’s most likely to occur.

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

  5. #5
    Forum Member Barry52's Avatar
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    Hello Russ and welcome.

    It will take you time to adjust to life with this disease but you will adjust. As others have said it is unlikely that your stomach problem is related to MND. We often need to change our diet due to swallowing issues and we certainly don’t want to loose weight unnecessarily. The muscle twitching and exhaustion are typical symptoms but the tingling you mentioned is not. As has been recommended I suggest you have the stomach problem investigated.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Russ, welcome to our forums. Sorry that you've had to join us on this dreadful journey. You've already had some good advice and I cannot add anything. I hope that you find solutions to your current concerns. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #7
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    Hi Russ,
    Welcome to this very friendly forum, you will find lots of advice on here.
    Sheila.

  8. #8
    Forum Member nunhead_man's Avatar
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    Good morning Russ

    Good to "meet you" but sorry it had to be here.

    I see you have already have had some good practical advice - if it helps, I get a lot from being on this forum and my experience is the more I say about myself the better help I get - perhaps a bit more about your diagnosis and how far you are into your disease might help us to help you?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  9. #9
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    Thank you, nunhead man and everyone else who has given advice. Illness started over a year ago affecting my voice. Then had problems wit left hand, hard doing up buttons etc.
    About six months ago started getting muscle twitching all over abdomen, top of legs after eating. Really disturbing but went away after a couple of hours. This problem went on for maybe three months and then stopped.
    However now every time I feel hungry I can feel nerves kicking off all over body including arms and legs. After I’ve eaten the nerves calm down a bit but then my stomach hurts and I feel exhausted. This cycle happens several times a day .
    Any tips on nerve pain would be very helpful as well as info on links between stomach and nerves.

  10. #10
    Forum Member Terry's Avatar
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    Hi Russ,

    You will have to explain the nerve issues more but I doubt that I can help you much.

    With your speech issues, have you looked into speech programs apps etc.

    Also you can use your voice and put the it on your tablet.

    Love Terry

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