Does anyone else have trouble remembering words? I normally get there eventually but it’s really annoying. I also forget appointments and tasks that I need to do and end up double booking myself and not doing things I said I would. This is really bad at work as I have to have two diaries and sometimes I forget to make sure that they both match up.
The nurse said that this was part of the fatigue but I’m not sure it is, I think it might be a relapse in its own right. What do you guys think?
Are you me? You are describing my memory problems very well.
Cognitive problems - memory etc - are very common effects of MS but they can be worked round.
In my case, I have really bad short term memory problems.
I can’t remember names - even of people I have known for a long time.
I can’t remember words and it is like hitting a brick wall when I am speaking - I can’t find the word I need but I can’t carry on speaking. I will be waving my hand around going “aaaahhhhh!!! aaaahhhhh!!!” like a complete fool until the word finally comes.
If I am sitting in front of my computer and think “I must Google “X”” by the time I have clicked on Google I will have forgotten what I what “X” was.
If I don’t get an appointment into my electronic diary immediately 99.9% of the time I WILL not remember it. The diary is on my phone and is shared with my husband.
Are you using paper diaries for appointments? It might be easier if you transferred to electronic ones which can be synched, so if you put an appointment in 1 diary it will be in the other. Hopefully this could prevent double booking appointments. An electronic diary might be considered a reasonable adjustment.
This may sound rather silly, but I know of one instance where a person with an inability to visualise an object in more than one orientation, had a bad score on the “Visualisation” section of the MoCA (a cognitive assessment tool, widely used in the neurology game). This led me to looking at research into links between poor Mental Rotation skills and poor memory - and yes, there has been some research.
The result is that I am now working on a simple tool to train the requisite skills, which I will then test on my wife (thanks Dear).
Memory is a very complex subject (I speak as a cognitive psychologist), but one “trick” that has been used for 2000 years is the “Method of Loci” - linking a fact to something well known that can be visualised (originally it was the statues inside a Greek temple), and it does work for a lot of people. My advice to a lot of people who have lost something (eg: “where did I put my car keys”) has been not to think where they might be, but rather to try and visualise where they were last seen. Many times this can work.
Most memory improvement techniques do not work for everyone - partly because not all memory problems are the same. I always advocate writing something down several times because the very act of writing gives time for the item to go into short term memory, and then into long term memory.
Yes. I get this too, I can’t even watch a good film without forgetting what has happened which is why I focus a lot on watching sport. Footy and darts are my favourite. This all started when my MS was firs diagnosed in 2005.
Thanks for all the help! At least I’m not the only one!
I’m just wondering if the problems are because the tecfidera isn’t working all that well. I’m thinking about HSCT and I’ve already had galitramer acetate (can’t remember the other name!) fail so if this is the second one that’s failed I would be eligible for HSCT.
Hi, have a look at my post from 2nd January titled ‘Loss of normal memory/brain function?’. You will see this seems to be a big issue with so many MS sufferers. I understand your memory problems and wish you all the best with finding your way to deal with it x
Well I checked out CBT on Wikipedia and it came up as c*ck and ball torture. I can see how that might aid memory recall, but dont you think that is a bit extreme Poll? I think it might be better to stick with a diary.
I’m not sure that it’s evidence of relapse, but I can confirm it just goes with the territory with MS generally… I feel like a right pudding at times, but have taken to carrying around a diary in my bag where everything gets written down (drugs, injection sites, appointments, passwords for various sites (not in plain text I hasten to add, just reminders) - even how to get to places that I don’t go every day, like the doctors surgery and the dentist! I’ve always had a decent memory, and I miss it. However, I just keep telling myself that “Those who matter don’t mind… and those who mind, don’t matter.” …
As others have said, yes this is a common thing in MS. It’s something that I have struggled with most since diagnosis (10 years ago this month). I recently had a 3rd cognitive assessment done which really didn’t tell me anything as being tested in a room with nothing else going on really isn’t anything like the ‘real life’ situations which seem to when my issues happen.
The psychologist told me that the test showed that I still have minor short term memory issues but, nothing to worry about and my overall performance was above average and showed that I am highly intelligent! I told him that my intelligence was never the issue, nor something I have ever worried about however, the fact that I can be half way to a friends house and forget the way, regularly do the ‘that thingy, whatsit dodah’ way of describing something, have 4 jars of coffee and 3 dozen eggs in the cupboard because my brain has decided that every time I go to the supermarket I need said item. Or, if I am somewhere really buy with lots of people talking, I tend to space out and not be able to follow what is going on.
The eventual outcome of my tests was that ‘maybe’ I was suffering from anxiety issues and cognitive behavioural therapy might help. I the CBT session where after going through everything for an hour, the therapist told me that she honestly had no idea why I had been referred as I clearly didn’t have any anxiety issues and had developed various ways of coping/dealing with the issue and it wasn’t causing me stress or worry…it was just something that happens and I get on with it so, she signed me off the service.
So after all that… months of appointments and referral, I am still exactly where I was. Quite happily coping in my own way and getting on with things. Sometimes I feel that the Dr’s etc don’t fully understand what it is like and don’t understand that sometimes we just ‘get on with it’ and don’t complain or expect the issue to be solved.
I suspect that this will be the outcome for me. I’m waiting for a neuropsychology appointment. The trouble is that we develop ways to manage our own memory and cognitive deficits. And if you are perhaps fairly intelligent, then the cognition tests don’t really cover your problems.
I have a double whammy. I was diagnosed with Transient Epileptic Amnesia.
Since 2007, i was having weird memory issues, coudlnt remember doing things, feeding cats twice, sitting in the loo, wondering why i couldnt pee (cos i had already done it lol), putting stuff on the cooker and having no knowledge. Anyway long story for another day.
Then there are just the loosing of names, words that simply will not come out, talking in thingey ma bobs, and whats its lol, typing and reading back and its gobbledegook…forgetting where one puts things. I now have a system, and everything has a place and my partner knows where i keep things, so if i cant find something he can lead me there.
The one thing i find a puzzle and really weird, perhaps you know what causes it…
The INVISIBLE item.
You cant find your purse. You look every single place it should be. Tear hair out. Look back in bag, nope its not there. So in the end frustrated you give the said bag to your hubby and say i cant find my purse looked everywhere, its not in my bag, he looks in and the first thing he sees yes you guess it is the purse… This happens a few times to me, its like my brain or sight has gone blind just for that one thing. Is there a name for this or a reason for it. I find it quite scary sometimes, as I really do think i am loosing the plot.
Oh to help my memory issues I played facebook games, like farmville etc where you have to attend crops and things, or else they all die off, and it did help me. x
Since my diagnosis I have developed really quite significant cognitive deficits. My short-term memory is completely shot. I can’t remember people’s names. I forget simple directions. Quite often I do not recognise where I am even though it is somewhere where I have been many many times. I even, quite often, walk past my own front store because I do not recognise where I am.
My cognitive problems have been the worst thing for me about my MS - far worse than my mobility problems. I have always been a bit of a lazy mare so having to sit on my b.t.m. for long periods of time rather than being able to go to the gym could be looked on as a bit of a plus! However, my mental capacity has always been a source of great pride to me. I am not boasting here (I couldn’t as I was not the smartest person in the family!) but until a couple of years ago I had a genius level IQ. Not any more.
Over the last three years I have had two full assessments by neuropsychologists.
The full assessments are very detailed and take some considerable time (both of mine took more than an entire half day to complete). They are not the very sketchy “I want to repeat the three words I’m going to say” type tests that form part of a very basic neurological examination but they are detailed, varied and complex thorough tests. Full neuropsychology assessment is not routine. In my case, they have been done centrally as favours for my consultant/MS nurse who have been aware of the distress that the cognitive effects of MS were having on me. Both experts were eventually happy to take the work on because I was, apparently, an “interesting and unusual case” because my IQ had been so high
The neuropsychologists will test and assess every different aspect of your cognitive function. The headline assessment of your IQ score is merely an amalgamation of all of those various tests - in my case, the final IQ figure was very much adversely affected by my short-term memory etc
Coping mechanisms that you have developed over the years may help you and may affect your individual assessment scores a little bit but they cannot mask the cognitive defects completely.
I am very glad that I had them because I really wanted to have an objective test of how bad things have got but I did find them very stressful experiences. When you have been used to being viewed as the very smart person in any situation seeing it written down in black and white that your current IQ is only just in the “normal” level is a real slap in the face. An even bigger slap in the face is when you see certain elements that contribute to the overall score being graded as “borderline retarded” (my first neuropsychologist was a little old-fashioned in his terminology!)
It’s really interesting to read of your experience Boblatina. It reassures me somewhat that they aren’t going to use a ‘one size fits all’ type approach. I’m truly sorry your cognitive deficits have been quite so extreme. Thus far, mine aren’t quite that bad, but I can see how it’s going, so I know what the future may hold. Which is the reason for seeing what I can do about my existing problems now.
my experience sounds very similar to Boblatina. Ex university lecturer I am finding my mental abilities increasingly foggy. Short term memory gone, cant remember places/people or anything. physically however my Ms is invisible…and also I am aware of a of a marked deterioration over the much dreaded X-mas period ;-(((