Cognitive stuff

I’m feeling a bit down. I was diagnosed with MS 3 years ago. In the last 6 months or so I’ve had a few new symptoms but the scariest one is this:

I can be out and about or in Tesco for example and all of a sudden it’s like someone switches off my brain. I don’t know where I am, what I’m doing there, who I’m with, where I parked the car etc. All I can do is stand there for a few minutes and slowly things come back to me. I have even looked for my parked car before and then realised that I actually went on the bus.

My short term memory is rubbish and I’m struggling to cope with every day life in that I can only cope with one thing at a time and it takes me so long to do anything as I really have to concentrate on what I’m actually doing. I seem to get so easily distracted.

I cant handle it if the telly is on, the kids are running around screaming and my husband is talking to me at the same time.

I struggle to concentrate in the car if the kids talk to me and I can feel myself getting snappy at everyone.

I told the MS Nurse last week about the “being out and about” thing and she just gave me a book - Facing The Cognitive Challenges of Multiple Sclerosis by Jeffrey N. Gingold. I have just finished reading it and I feel that I could have actually written three quarters of it myself.

My last relapse was a minor one almost two years ago and I’m not sure if these cognitive issues are seen as a relapse or simply a worsening of symptoms.

Does anyone else suffer with cognitive symptoms? I am struggling to get anyone to take me seriously and I am starting to worry that either I am imagining it or that I’m going completely bonkers :o(

Hi you might be fatigue my brain goes when im tired, i called my husband after work and said to him where are you im waiting for you, his reply, youve got the car oopsi dont think its dementia as you dont remember you forgot,i hope that makes sense. take care julsiexx

Hi,

your not going mad, i get what you describe,and have been doing for quite some time,its one of the worst things that i get with the ms,and like you when it first happened i thought i was going mad, a also cant function, take for example, i dont know HOW to brush my teeth, cant work it out !!

and once i was baking a pie, something i have done for 20 years, and couldnt work out what to do,and even baking a jacket potato in the microwave was confusing,when i told the neuro, he said ‘we dont expect that happen again’ but thats no good to me !!

I have put it down to brain fatigue,its the only explanation that i can come up with,and i try not to get too stressed now, which isnt easy,because its really very scary as you know.

jaki xx

No your not going bonkers and your MS Nurse will believe you. I am PPMS and only scored 60 out of 100 with the cognitive test one of my nurses carried out. It does come and go. I cannot process new information, but to help myself I try and memorise things just little things. It has taken me 3 yrs to memorise my own mobile number so be patient. I still do what you were doing in the supermarket, I just stop for no reason and just stare at things for as long as 20 mins. What I have found to help is folic acid and magnesium. Folic acid is good for the brain which is why pregnant women are told to take it. You will see a difference if you take 5 folic acid tablets.It takes about 2 weeks to work. Give it a try it works for me and my brain is fuzzy all the time, but only when I have forgot to take them.

MM

All this sounds so familiar. I often forget what I am doing, why I am where I am, where I have left the car (in the past , I am not driving now).

As an IT engineer by profession, I used to think myself particulary apt with all things technical. I now often find it impossible to operate cash machines, ticket machines and those darned self-serve check-outs (people must look at me and think I’m some kind or moron)…

Don’t worry it happens to the best of us, but it is very frustrating when the cog fog comes on. You just have to try and prepare for it as best you can.

For example, my nearest and dearest know and accept that sometimes I need to go lie down in a quiet room if the noise is getting too much for me, so it’s not seen as rude if I just suddenly disappear from the dinner table.

Same at work, in that my colleagues know that I’m not ignoring them if I decide I have to eat lunch in the quiet of my office rather than joining them to the hustle and bustle of the canteen.

I feel your pain. I used to be in technical sales for 16 years. Used to spending time in board rooms with directors and IT Managers and putting together technical specs and proposals. I dont know how I used to manage :o/

Thanks everybody for you’re support. It’s comforting to know that I am not alone. I am waiting to find out tomorrow if i am to be sent for another MRI. Is anyone else on copaxone? i always thought it was to delay the progression but have just been told no, it’s to reduce the severity of relapses.

I don’t know whether I’m avoiding mine. I’ve become aware that I make lots of lists, so I don’t forget to do things. This has probably increased over the last year or so. I’ve read somewhere too that it’s not the same as dementia. With Dementia you write a list, put it somewhere, then when you find it you don’t understand what it means. With MS you know you’ve written a list, and where you’ve put it, and then when you dig it out again, you understand what it means.

I lose my train of thought mid conversation. I can be doing something at work, and then jump to something else, and then forget what I was about to do (unless it’s written down!). I also get stuck with the word on the tip of my tongue. Before I start a sentence I know what I’m going to say, but by the time I get to that word I’ve forgotten it. I think it’s something that we all do, not just those with MS. How many times have you been talking to someone, and they’ve forgotten a word, but you know what it is, so you help them out?

One thing I did recently, that I do find scary, hubby and I were discussing one evening what to have for breakfast. I made breakfast the next morning and completely forgot what we’d discussed so he didn’t get what we’d decided. I know we talked about breakfast but I can’t remember the detail.

Sorry, I’m waffling now. I shall go. I just wanted to add to what others were saying. Cheers, Gill

Hiya

As you can see from all of your replies, you’re not alone here. I find that the cognitive stuff bothers me the most because it make me feel like I’m not ‘ME’ anymore.

I have lists for shopping, not your just your usual list of things I need but I also have to have a list of things I DON’T need. I learned that after I ended up with enough toilet rolls and tea bags to last a year! (Yes I had a list of things I needed but would see the tea bags and think I forget to put them on the list and buy them anyway DOH!).

I also use the reminders in my mobile phone for EVERYTHING. I always take a sat nav out with me as there have been too many times when I’ve got 1/2 way somewhere and suddenly not known where I am. I always keep my keys and my bag in the same place (my partner thinks I’ve got a bit of OCD) but at least if they’re always in the same place and I’ve ‘lost’ them, at least he knows where to look.

It can be a very scary thing but over time and with practice, you will find ways to cope with most of it.

Sue

x

I agree with you smh. I think the cognitive stuff is the hardest thing to deal with. And there’s always that question, is it just the MS or is something else? Dementia or something like that. I find when I talk to my dad that he forgets words, and I am not much better. He says I should know coz’ I’m a lot younger, and it’s ok for him to forget. But then he doesn’t know about my MS. I also suffered with slurred speech, back in December, and I just felt really embarassed. Hardly anyone could tell, until I mentioned it to them, so I suppose it felt worse to me than it did to everyone else. But out of work, I know I probably avoided social situations for a few weeks, because I didn’t want people to think I was just drunk. I don’t know if generally people aren’t aware of anything wrong with you, but you’re aware coz’ you’re closest to it (obviously) and my husband is too, because he spends so much time with me. I’m 44 now, so I do just try and get on with things.

[quote=“speedyg”]

I don’t know whether I’m avoiding mine. I’ve become aware that I make lots of lists, so I don’t forget to do things. This has probably increased over the last year or so. I’ve read somewhere too that it’s not the same as dementia. With Dementia you write a list, put it somewhere, then when you find it you don’t understand what it means. With MS you know you’ve written a list, and where you’ve put it, and then when you dig it out again, you understand what it means.

I lose my train of thought mid conversation. I can be doing something at work, and then jump to something else, and then forget what I was about to do (unless it’s written down!). I also get stuck with the word on the tip of my tongue. Before I start a sentence I know what I’m going to say, but by the time I get to that word I’ve forgotten it. I think it’s something that we all do, not just those with MS. How many times have you been talking to someone, and they’ve forgotten a word, but you know what it is, so you help them out?

One thing I did recently, that I do find scary, hubby and I were discussing one evening what to have for breakfast. I made breakfast the next morning and completely forgot what we’d discussed so he didn’t get what we’d decided. I know we talked about breakfast but I can’t remember the detail.

Sorry, I’m waffling now. I shall go. I just wanted to add to what others were saying. Cheers, Gill

[/quote] Omg what you have just said sounds exactly like me!

Oooh, what a tricky question. In my case, is a short lag in recalling things due to MS, or increasing age? The differentiation between MS and Dementia (see speedyg, above) is a clear one, and by normal medical criteria I do not have Dementia. That leaves old age or MS.

There is a “memory trace” theory of how memory works, that argues that an item of data is encoded as a pathway through a set of cells. It is a bit like a footpath through a wood. All the time you use the path it remains clear - stop using it and it gets all overgrown. That could account for the old age effect. This does happen (like when I can remember a piece of research, but not the name of the first author).

What it does not account for is the very short-term effects. Sort-of a process that goes > “I must check that on the computer” > opening the browser > not being able to recall what I was going to check. Going back to where I was will start the memory function again, and I can now recall the item of interest. Now there is only one theory of memory that could account for that (one that says that an item must be in short-term memory for several seconds before going into long-term memory). Now, I did not have this sort of problem before the onset of MS. So, yes, it probably is due to MS.

As for making lists - I just cannot do this. In the past, I did try the Filofax, the Pocket Information Manager, the PDA, and still ended up with a diary and a wall planner. For me, the A0 size (1 year) wall planner is the only thing that suits me, and it works for two people both having medical appointments. I am now trying to use a calendar on a PC, synchronised with a PDA - but that is as much a technical experiment as something to rely on and actually use. If I can keep it up for a year, then it could act as a check on my wall planner. What I cannot do with it (unlike a wall planner) is roll up last years planner and store it. So, when one of us says something like “When did I first go to see Doctor X about my Y symptoms?”, and we know that it was about 3 years ago, then out come the old planners.

As several people above have found, the best system is the one that works for you

Geoff

hi everyone ", I’ve searched today as I’m really get scared now with driving. Not diagnosed as yet however original poster and replies is me most days,! I barely drive now anyway due to muscle spasm/spasticity in right leg. However today i had to drop daughter off at well known place to me then when at busy junction traffic lights when I seen green I just pulled out even although I knew there was a filter light I had to wait on. I’m terrified but was so very lucky not to have caused an accident!

i was at a checkout in asda when the brain fog struck.

the lady on the till asked me if i had my own bags, i said yes.

but then i just stood there staring at the bags.

was starting to feel a panic attack so started deep breathing.

muttered “so sorry” and the lady said “you look unwell - do you want me to get help?”

i explained that i have ms and the fatigue hits suddenly.

bless her, she packed my bags and got a young bloke to help me to my car.

carole x