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brain fog/frustration

hello

its been a long time since i have felt to write on here, but starting to feel a bit frustrated these days.

i have been suffering from a brain fog of some form. i go to work do my job and then find out days later i have made mistakes, try and have conversations and the words dont come out. ie go put that in the (points to object) that thing over there. the erm yeah cupboard/fridge/bin etc. my son recently said mum you cant actually say a sentence these days without pausing can you? (to be fair he doesn’t know about MS yet as why worry him needlessly at this time in his life).

i can lose things, then eventually find them but in the meantime not knowing where i put them at all. when i talk i can find my eyes look up as i am trying to recollect what i am thinking but to be honest this is frustrating. or i just forget something i want to say then it eventually comes back but i must look like i am mad LOL

i can sometimes feel like i am going to be dizzy (i never are but the eyes feel like they could be) that doesnt make much sense but hard to explain.

recently i feel like i am balancing on a knife edge of coping. i am a happy positive (mostly) with this illness and get through it and i know i could go and ask dr for a line to help but i have good manager who listenenes and workmates who are good and help so would rather get through this at work but can anyone relate?!!?

i hope so thanks in advance :slight_smile:

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yes, loads of us! Have you not seen the thread of mammoth proportions, about brain fog?

maybe you have and cant remember…that is typical!

the thread has over 2k replies now.

it began with socks, then invasions, now boozing and all sorts.

just whatever comes to mind really.

it has slowed down to include just a small handful of members now.

it could be too much for folk to handle.

this one may grow rediculously too, who knows!

my brain is very, very tired…

pollsx

The monumental brain fog thread is too much for me to handle!

But yes, I get this too. Worse when tired, like everything else… It’s frustrating because I’ve ALWAYS been clever and articulate, and a bit of a show-off know-it-all, but now I’m hampered by words that come out wrong or refuse to come out at all, and a really unreliable short term memory. My family get very frustrated because I can’t remember things like where did you put that object? or what were you just talking to so-and-so about?

It makes me feel stupid and I just have to remind myself that I’m still me, even if I have just told my daughter off for leaving her bed on the floor and forgetting to make her book… I try to see the funny side when I can (like Easter’s “hot cross bums”!) and not to think too much about how much I might deteriorate…

I do get lightheaded/dizzy but I don’t feel like it’s directly connected - that’s just heat and fatigue ganging up on me!

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Hi I haven’t been on this site for a few years so haven’t seen it. Will check thanks xx

I too can relate to all this. Until last year I was in quite a stressful job. I would have to do lots of reports, spreadsheets etc. Sometimes I would do a spreadsheet and save it, only to look at it a few days later and wonder who on earth wrote it, as it was rubbish. In meetings I would answer a question only to be told that they’d covered that 10 minutes ago. It looked like I wasn’t listening. In a management training course everyone had to write down what they thought of the other people in the room. What many people thought of me was “distracted”.

I also pause a lot whilst talking and it often causes arguments as I will say “hold on, I’ve not finished yet”. Forgetfulness is also a pain. Just this afternoon I was thinking about going online to look at some power tools. Could I remember the word “Screwfix”???

Hi joolie

This is my idea of what’s going on.

MS damages the nerve cells in our brain (and spinal cord). If a tiny part of the circuitry is missing for, say memory or speech, the brain has to re-route the signals. This isn’t reliable and takes time for the brain to relearn the route and also takes a lot more energy. (Our brain uses up about 20% of all our energy anyway).

That’s why words don’t come out the way they should and why it is all so exhausting. You are having to work very hard to do things you take for granted.

I’m not medically trained so please feel free to disagree, anyone.

Best wishes,

Anthony

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Brain fog is a regular symptom for many MS sufferers. Mine seems to be getting worse. I know what you mean about not being able to find the right words. I’ve had occasions when I’ve thought about an item but the word that formed in my mind was wrong - coat hanger when I was thinking about a chopstick, for example. I’ve also had trouble actually saying words, even when I know what I want to say. The only solution to that, for me, is to let people know that I have to speak slowly.

I also feel light-headed from time to time, without actually having vertigo or falling over. I’ve been told that nothing can be done while it’s intermittent and not causing any real problems. It’s just something that I have to live with. If I do have vertigo I take Stugeron. They’re travel sickness pills recommended by a pharmacist for occasional bouts of vertigo.

Hi Sorry your struggling at the moment.

I don’t know your situation, but I myself was suffering from severe Brian Fog over the past 18 months and can relate to what you are going through. I could not have come on this site then, due to it. It wasn’t that my memory was even worse than normal, it was as though my brain lost the ability to function. Despite the slow cognitive changes over the last 20 years, with me though, the onset of the extreme symptoms were due to being B12 deficient.

Have you had your B12 levels checked??

I’m not suggesting a miracle cure - Of course MS does cause these symptoms and everyone’s MS is different, but if your blood tests didn’t cover B12 it is something to look into. After it was discovered, I had a course of B12 injections and even after a short while I noticed the difference. It was like magic! My brain slowly returned (a little less) back to how it was 18 months ago and I also started on Iron tablets as my iron levels were low and the combination of the two have made a noticeably difference. I now go every 3 months for a ‘top up’ and fingers crossed they are continuing to help.

I wish you well and hope your situation changes for the better soon.

Kind Regards Equus

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Thankyou Equus for posting this. I know of someone else whose vit b12 levels were low or deficient as you say.

Is this something we can specifically ask to be checked for?

Same thing is happening to me… i get told I’ve made mistakes and can’t understand what I did wrong, and I used to be quite good at my job… now I need someone to keep a check on me! The systems have all changed, and I’m slow to pick up on the new systems and routines… back in the day it wouldn’t have phased me so much, but when you’ve got used to something over the years, it’s disconcerting when it changes!

Yes, I am sure this is the case. When you have to focus on every step you take, concentrate on not dropping that thing you’re holding, take care over every sentence you form - it’s exhausting. No wonder we are in a bit of a fog, our brains are just exhausted!

It’s the same reason women who are pregnant or have a new baby are in a fog, they call it “baby brain”, and it’s just because they’re physically tired, not getting enough sleep, and their bodies and brains are in a constant state of flux, learning to cope with new demands and new worries. I think MS fog has a lot in common with baby brain!

Hi I have regular 6 month blood tests normally, but don’t actually know if they always or have ever checked the B12. I had mine included in the testing this time, after I told my GP how bad my ‘thinking’ and memory had suddenly become. She also tested for Celiac Disease around the same time due to all my other systems - this was negative, but as she says, you can’t assume everything is down to the MS.

I don’t see why you couldn’t ask your GP if the B12 levels were included in your blood tests and if not could you request it to be done tho? I’m lucky I have a doctor that I can talk to, know lots of people aren’t that fortunate.

I wish you well and good luck.

Equus1965

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Hello

I attended MS Life Manchester in 2014 and one of the events discussed cognitive issues.

It was one of the most attended while I was there, there were not enough seats for everyone for everyone attending.

Lots of people were frustrated with the lack of any support and even acknowledgement that this is a major issue for many people with MS.

I remember one person urging everyone with MS not to talk about this as employer’s would use this as an excuse to get rid of anyone with MS via the “not safe or competent to work” route.