Russ60

[Guest]

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 it’s 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.

[Gillette]

Hi Russ60

Welcome to the forum no-one wants to need. Sorry about your diagnosis. You’ve come to the right place for information and support. Sorry I can’t help with your questions but I’m sure someone will be able to offer some advice soon.

[Terry]

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

[Ellie]

Welcome to the Forum, Russ, sorry you’ve had to join us.

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?

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.

[Barry52]

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

[Lynne K]

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

[Sheila]

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

[nunhead_man]

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?

[Guest]

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.

[Terry]

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

[Ellie]

Hi Russ,
I do think you should tell your GP about your stomach pain in case it has nothing to do with MND. It may be an ulcer, IBS etc. and not ‘just’ indigestion or trapped wind.

Do you take Riluzole or any other MND-related meds?


The nerves affected in MND don’t carry pain signals to the brain.


Gabapentin is the drug most frequently prescribed for neuropathic (nerve) pain, but there are also alternatives.


Best wishes,
Love Ellie.

[Olivia H]

Hi Russ
You will find lots of support here. Just to mention, I've had mnd almost 8 years, and get lots of tingling, numbness, buzzing and vibration sensations, like having a mobile phone next to you! Annoying but not usually painful, thankfully.
All the best.
Olivia

[TAPG1]

Hi Olivia, Its good to know that lm not the only one who gets those symptoms. I mentioned these to my Cons and was told you can experience them lve also read replies on this forum and some do experience them also. As you said usually not painful just annoying. Hope your keeping well and had a lovely Xmas Olivia.