Hello everyone. I am new to this forum but already have found it to be very helpful. One question which puzzles me and it seems to puzzle my MS specialist, MS nurse and GP. Having been diagnosed with PPMS and having got used to being off balance and bombarded by other strange symptoms the most annoying one is that as soon as I have eaten a meal or snack I instantly loose my balance and walking becomes virtually impossible. Its difficult to walk any great distance and my legs, feet and ankles become disorientated, in as much that my legs want to go off in different directions and my balance and coordination is greatly affected for up the half an hour. Cant explain it any further but has anyone else been affected by this anomaly. The only medication I take is Flecainide for atrial fibrillation. Thanks.
Snacks no but a full meal, particularly a hot one, yep. I always struggle to get my balance straight after eating moreso than the usual struggle!
Hi, Windymiller
Iām still waiting for answers, my diagnosis isnāt completely clear yetā¦ I find that I canāt multitask, maybe things like eating or even digesting are too much for you to cope with and still function, my biggest problem is having to think to walk and if someone is in the way or its a slight slope or uneven ground my brain canāt process the changes, outside is completely out of the question there arnāt enough things to hang on to and my legs buckle.
Michelle x
Thanks for enlightening me about meals. What I should have said things get worse after a full meal, usually hot and it seems to be worse more or less as I have mentioned. A similar thing happens if I get emotionally stressed or have to go outdoors for any length of time. I used to love being outdoors but lately I am reluctant to leave the house-It is difficult and its something that has crept up on me unawares until it manifested itself as described. Its difficult to talk about it when you have always been very outgoing but my health rules my day from the time I get up in the morning until bedtime. Its a very big life changing event and I never expected to get MS. Thanks for your replies they were helpful.
Paul.
Hi Paul and welcome to the board.
What you describe in your second post I think is all very MS. Getting stressed, having to go outdoors for any length of timeā¦ itās all unfortunately very MS. Stress is hell for MS. Makes everything worse
With the food, Iām wondering if youāre suffering from Utthoffās Syndromeā¦ very common in MS. Itās when your core temperature goes upā¦ makes your balance go off, vision go blurry, all symptoms go haywire.
Before MRIās and lumbar punctures they used to give someone who they thought might have MS in a hot bath to see how they coped afterwards. It was the only way to diagnose MS.
So sounds to me thatās the problem.
Try to eat your meals when theyāve cooled off a bit. Also try smaller meals but more often.
MS does mean so many changes but if you take it slowly youāll be ok. Try to take it one day at a time and ālistenā to your body. Notice what makes things worse and how you can change things for the better.
Nice to meet you,
Pat xx
Hi Paul and welcome to the board. Itās not something I have suffered from but eating can stress me and as has been said stress can affect us in so many ways.
Don
Hi Paul,
Welcome to the forum.
Canāt say Iāve had that problem with food but stress, yes! Causes the most terrible problems.
take care,
Nina x
Hello everyone and thank you for your replies. Its been a big help to me and I have taken on board what you have all said. And to think it all started a few years ago with numbness in my left footā¦Never thought for one moment it was going to be like this but never mind, best foot forward as they say.
Hi Paul
Welcome to our āgangā, canāt say I have had the problem after eating, although I eat so slow my food is usually cold!
Stress ā¦now thatās a whole different ball game, smallest hint of it and my is can go into overdrive. Its all these hidden symptoms that makes it such a c****y illness.
Hang in there, it will get easier, take one day at a time, and be kind to yourself.
Pam x
l find l am better for not eating many carbs - especially anything with gluten in it - Digesting it takes all my energy - and seems to upset my āinnardsā. l am not allergic to gluten - so perhaps just a bit intolerant. So l find l am better if l stick to the āhunter gathererā diet. Lots of protein/veg/salad - but no grains. This āhigh fat low carbā is a eating regime that Barry Groves wrote lots of books about some years ago. He found out from people with MS - how much better they felt when sticking to it. But it helps everyone. Especially, diabetics. His Natural Health & Weight Loss - and Trick and Treat - are two of his interesting books - they contain day to day recipes//menus.
We are what we eat. And grain/cereal and carbs will not help if you are constipated - the fibre swells and blocks parts of the bowel causing lots of discomfort.
Hi and welcome Paul
I thought I had PPMS but now know RRMS, complicated story! Anyhow, yes Iāve heard Uthoffās can affect people when eating. For me it was a hot bath or after exercise, I could barely ālock-outā the bones in my right leg, so really difficult to even stand.
I totally agree with spacejacket too. I cut out gluten quite a while before I was diagnosed due to tummy problems and I noticed how much more awake I was. I eat it very occasionally now and it makes me feel hungover the next day
It might be worth looking through any letters you have detailing your diagnosis. It was in one of my rehab letters that I have āattaxiaā on my left. I think (but canāt be sure) that itās the ātouch my finger then the tip of your noseā test that always make you feel theyāre having a joke on you. I had to do that test again recently and I realised how wobbly and difficult my left side is! Anyhow, I mention that as itās what I think makes me feel so wobbly and just uncertain at times (And yes, I have used Dr Google quite often, as Iāve not understood the terminology in these letters - so donāt take me too seriously!). The neuro said about of one of my lesions that it affected messages passing from left to right in my brain and why I can get very wobbly.
OK, Iāll shut up now
Sonia x
Hi Paul and welcome to the forum. Like many of the others I donāt think food affects my balance but I wouldnāt really know as itās so bad most of the time. A stick definitely gives me a lot of confidence and keeps me (mostly) upright outside. Indoors I usually rely on furniture and walls. Iāve just been dx with Coeliac Disease so Iāve had to cut gluten out of my diet. It hasnāt improved my balance, dizziness or mobility but I think Iām less bloated and my bowels are behaving better.
I donāt think thereās a link between Coeliac and ms but Iāve heard of quite a few people giving up gluten. Itās not the easiest thing to do but might be worth considering if you feel better for it. There canāt be any harm in it as long as you make sure you get enough calcium as Iāve heard that can be a problem but again Iām not sure if thatās the diet or condition.
I hope you get the answers youāre looking for. Take care.
Cath x