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 doesnāt 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?!!?
The monumental brain fog thread is too much for me to handle!
But yes, I get this too. Worse when tired, like everything elseā¦ Itās frustrating because Iāve ALWAYS been clever and articulate, and a bit of a show-off know-it-all, but now Iām 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 canāt 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 Iām still me, even if I have just told my daughter off for leaving her bed on the floor and forgetting to make her bookā¦ I try to see the funny side when I can (like Easterās āhot cross bumsā!) and not to think too much about how much I might deteriorateā¦
I do get lightheaded/dizzy but I donāt feel like itās directly connected - thatās just heat and fatigue ganging up on me!
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 theyād covered that 10 minutes ago. It looked like I wasnāt 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 ādistractedā.
I also pause a lot whilst talking and it often causes arguments as I will say āhold on, Iāve not finished yetā. 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 āScrewfixā???
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 isnāt 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).
Thatās why words donāt 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.
Iām not medically trained so please feel free to disagree, anyone.
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. Iāve had occasions when Iāve 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. Iāve 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. Iāve been told that nothing can be done while itās intermittent and not causing any real problems. Itās just something that I have to live with. If I do have vertigo I take Stugeron. Theyāre travel sickness pills recommended by a pharmacist for occasional bouts of vertigo.
I donāt 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 wasnāt 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??
Iām not suggesting a miracle cure - Of course MS does cause these symptoms and everyoneās MS is different, but if your blood tests didnāt 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 ātop upā and fingers crossed they are continuing to help.
I wish you well and hope your situation changes for the better soon.
Same thing is happening to meā¦ i get told Iāve made mistakes and canāt understand what I did wrong, and I used to be quite good at my jobā¦ now I need someone to keep a check on me! The systems have all changed, and Iām slow to pick up on the new systems and routinesā¦ back in the day it wouldnāt have phased me so much, but when youāve got used to something over the years, itās 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 youāre holding, take care over every sentence you form - itās exhausting. No wonder we are in a bit of a fog, our brains are just exhausted!
Itās the same reason women who are pregnant or have a new baby are in a fog, they call it ābaby brainā, and itās just because theyāre 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 donāt 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 āthinkingā 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 canāt assume everything is down to the MS.
I donāt see why you couldnāt ask your GP if the B12 levels were included in your blood tests and if not could you request it to be done tho? Iām lucky I have a doctor that I can talk to, know lots of people arenāt that fortunate.
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 employerās would use this as an excuse to get rid of anyone with MS via the ānot safe or competent to workā route.
