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I KNOW That I Know, But I Can’t Recall

In the last few years or so, this has become more and more frustrating to me as it continues to become more and more of an issue every day (well that’s how it feels). I can remember being a kid in middle school and high school; I was so sharp and so quick (I am talking about my brain, although I always made sure to finish “the mile” among the first)! I was pretty much a straight-A student (with a few “justified” exceptions) and even managed to graduate high school early.

My brain was quick

School was “easy” for me, which (because I had all this extra time) meant that I often got into trouble, well, I usually didn’t get caught, but you know. When I did get caught, I was that kid who was quick to challenge and discard someone’s authority; I think I saw it as a personal challenge. I loved to argue and to debate, no matter who it was with. Regardless of what the debate was about, I could take any position and defend it like I actually believed it while making sure my argument was logically “flawless”. I always had to “win”! In retrospect, I was totally a little know-it-all jerk who would annoy the heck out of me today, but that is not the point. The point is that I was quick, my brain was firing on all 8 cylinders from the moment I woke up till the moment I went to bed.

Memory

By quick, I am referring to executive functions like problem-solving, planning, reasoning and memory, but for the sake of this article I just want to break that last one down a bit. Memory. It is not as simple a function as you may initially think. A lot of people (with and without MS) might be able to remember the lyrics to a song they have not heard in over a decade but at the same time might not be able to remember the name of an actor they are watching on TV RIGHT NOW.

On the tip of my tongue

Well, more than likely, that song is something that they memorized, something they DEDICATED to memory, whereas the name of that actor? They probably did not sit down and actually try to memorize it. But if this is happening to you (like it has been for me for years), then more than likely you know you know the name, it feels so obvious! It’s that guy, you know, him! Everyone knows him, from that one movie! With the thing! Oh man… what’s his name? At that moment, someone starts to say the name, and you try to cut them off and finish it first as if you figured it out on your own. “Hugh Jack-“ “Jackman, Hugh Jackman, yeah I knew that!”

My memory is steadily getting worse

You see, that memory was there, it was in your brain, you just could not find it, you could not recall it. Think of it like this: I am sure you have seen some sort of cartoon where a character is trying to remember something and the camera cuts to “inside their brain” where a bunch of little people are running around like madmen searching through file cabinets and tossing papers around as they desperately try to find a fact or memory. The paper that they are looking for is obviously the memory, but the actual action of them looking for that paper would be the brain trying to recall that memory.

The ability to recall

“Recall” – that is an important word that I will be focusing on. You see, my issue? What I am talking about here? It’s not my memory, it is my ability to recall my memories, because most the time I know that I know something, but I simply can’t seem to “access” it. Actual events in time or personal experiences are one thing, but the worst part (for me) is my inability to remember facts that I know I know, like someone’s name, what a tool is called, a TV channel, a place or a time. Not being able to recall the name of an actor right away is pretty typical for most people, but first, to better understand my frustration with my brain, think about how I described my brain growing up.

The difference feels drastic

When I was younger, if you had asked me to name all the manufacturers of motorcycles and cars in the United States, I would not have even needed to think about it. But after I was diagnosed with MS, that kind of recall slowly became more and more difficult. All of a sudden, I found myself having to spend more time thinking about things until I reached the point that I just could not remember what I even had for dinner the previous night, which is a huge step down from where my brain used to be, which makes this a thousand times more difficult for me (personally)! In terms of muscles, it would be as if 5 years ago you could easily lift 100 pounds, but every year since then it has become more difficult, until now you are struggling to lift just 25. I used to be able to recall information in just a fraction of a second, but now it seems to take me forever! The difference feels so drastic to me.

What will my memory be like 5 years from now?

So how well my brain could function just 3 years ago was nothing compared to how well it functioned 10 years ago. How it functions today is nothing compared to 3 years ago, and that scares me because I am only 26 years old, so where will I be in another 5 years if I can’t stop this progression? Will this keep getting worse, or will it start to plateau even if I don’t actively try to intervene? Because lately, it seems like at least once an hour I have to stop what I am doing to really try to remember (recall) something that I know I know! And not just random facts like what some organization is called but important stuff like appointment dates or simple things like how to spell a word like “found”. Sometimes simple words or names sound so foreign to me that I actually have to sit and wonder if it is an actual word/name! Now, I was going to end this post on a strong example of me not being able to recall something, but after sitting here and staring at the screen for 8 minutes, I realize that I just can’t recall any good examples of things I can never remember… go figure.

Is this a major issue for you? Does it affect your daily life? What tools do you use to try to help you work around this? Share below!

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Comments

  • Baharehhi
    11 months ago

    Tiredness, fog, missing my sharp mind, forgetting words or cannot make sentences or even it gets lost in my brain what I want to say!!! And I am thinking that I write xxx but actually, I am typing yyy !!! Or I am thinking that I am saying Wednesday but actually I say Monday !!!!

  • Matt Allen G author
    10 months ago

    I notice a lot of the time I will think I wrote a word like “practicing” or “practiced” but then I look at. what I wrote and I just wrote “practice”. I always seem to leave off the suffix even though in my mind I could’ve sworn that I included it.

  • Baharehhi
    11 months ago

    Tiredness, fog, missing my sharp mind, forgetting words or cannot make sentences or even it gets lost in my brain what I want to say!!! And I am thinking that I write xxx but actually, I am typing yyy !!!

  • Baharehhi
    11 months ago

    I am suffering from some issue, often people think that I can not speak language!

  • Matt Allen G author
    10 months ago

    Sometimes I am the one who thinks I can’t speak English anymore! It’s so frustrating! People say I sound fine but I know there just say not wish dries me even crazier!

  • Marlene1105
    2 years ago

    I can totally relate! I have got lost driving because I couldn’t remember how to get home. (Scary!) Now I try to remember to write down everything in my date book; not just appointments, but where I went and how I got there. That has really helped me!

  • Matt Allen G author
    2 years ago

    I have pads of paper and stick notes EVERYWHERE. I even have a giant fold out poster board just to keep all my color-coded sticky notes organized! Calendar reminders on my computer, on my phone, alarms, I utilize everything I can to maintain an artificial memory!

  • Cari
    2 years ago

    I say, “I can’t find the words”….

  • Baharehhi
    11 months ago

    Me too

  • potter
    2 years ago

    You were talking about how sharp of memory you had in junior high it jogged my memory when my mother would scold me for doing my homework, watching a television show and reading a book all at the same time. I feel lucky if I can follow a television show now, I did Luminosity for two year and my math and spelling scores kept plummeting. My other scores stayed at the top, it was so depressing I didn’t sign up for it any more. It takes me forever to write something like this. I keep leaving out words or put in a word that doesn’t make any sense at all. I have to read it several times and make sure someone could understand what I am trying to say. Good luck to all of us. Potter

  • Matt Allen G author
    2 years ago

    MULTI-TASKING???? Sounds like a Marvel superhero movie! haha… Every tiny thing that I do requires my undivided attention now…

  • Charlie
    2 years ago

    Hi this is the first time I have posted, been a lurker up until now, 68 and had SPMS for 18 years well only the secondary bit for the last 3 since a major relapse. Anyway just read all of your posts on I know but can’t recall and they nearly all describe what I have been going through to a T but it all came to a head last Sat night it was my wife’s 60’th party and I was going round introducing everyone all of which were good friends who I knew well could I remember their names “Could I hell” and if I did I could not remember 10 mins later. It was like I was on Planet Zarg and the house had been invaded by aliens! I was completely lost so frustrated when I went to say oh this is so and so but there was nothing there! and I had not had a drop of alcohol now I had to correct my spelling of alcohol because I even got that wrong! I so miss having a decent conversation because I loose the plot or repeat myself but I know I have done it! Oh how I wish I could have an in depth conversation like I used to do.

  • Matt Allen G author
    2 years ago

    THAT is what I find to be the most embarrassing, introducing friends but then reaching that one guy 9who I have known for years) and totally blanking… “and this is… uhh…”

  • Julie
    2 years ago

    My memory has gotten steadily worse. I was diagnosed 16 years ago and my neuro at the time told me I had had it for 10-15 years before. Not that I’m old, just 57 but I sometimes wonder if some of the problems I’m having are MS or just the process of getting older.

    For the most part, I find these things embarrassing. Not only can I not come up with names or words, I will be in the middle of a conversation and forget what I was talking about. Or I will say mountain when I meant to say shoe. It would be one thing if the 2 words were closely related but they aren’t.

    Years ago my first neuro was doing a research on the memories of people with MS. It was a 2-year study with the results not being released until 5 years later. I had forgotten all about that study. It was really intense and wore me out. I think I need to call and find out what my results were.

    In closing, I have to tell you the one thing I have discovered is iPhones. I always have mine on me or near me. I keep everything in notes. If I’m working in the kitchen and find I’ve run out of something, it goes in the folder I have in notes labeled “groceries”. All I put all my follow-up appointments into my phone before I leave the office or when I’m on the phone making the appointment. All my reminders, into notes. Then I set reminders for the day before. Smartphones have been my redeemer. Now, if I could just remember where I left mine……

  • Matt Allen G author
    2 years ago

    Well, I would not feel embarrassed, I am 26 and you just described me perfectly. Notes on my phone, iCal, sticky notes, etc. I have a posterboard just for all my sticky notes!

  • Jason
    2 years ago

    Wow, Matt… That sounds like me. I’m 42 and was diagnosed 4 years ago. My 1st neuro told me that I probably had the disease for 10 years before being clinically diagnosed based on my MRI and old lesions. I thought the memory issues were due to age as well. I’ve had some physical issues but nothing that has shut me down completely… YET.
    Take my DMD’s everyday and pray. Thanks for what you do and your voice to our cause!

  • Matt Allen G author
    2 years ago

    I imagine it is very difficult to differentiate the difference from age-related cognitive issues and MS-related cognitive issues but in MY case I am only 26 so… this should not be happening haha… ugh… So I worry about what I will be like in another 10-20 years.

  • Dimitri
    2 years ago

    This is exactly what my neuropsychiatric tests show. The information is getting into my brain and my executive function is still intact, but I have trouble with the retrieval of information as well as a slow processing speed. For me this is devastating.

    In a previous life I used to be an engineer. I used to pride myself on my math skills. Now I sometimes have difficulty remembering my multiplication tables.

    I too have had difficulties remembering people’s names. I sometimes find myself using the brute force method to retrieve the information. I start with the letter “A” and recall names that begin with “A”. If nothing is recalled I move to the letter “B” and so forth until I have recalled it or have finished the alphabet.

    Nowadays my phone has become my saviour. I realize I have become overly dependant on it, but we have to do what we have to do to get things done.

  • Matt Allen G author
    2 years ago

    I have never had one of those tests. I would like one to sort of “keep track” of things but I am not sure if it would actually benefit me, I don’t know, I have not really looked into it. And yeah, last night was an insomnia night and I was doing the SAME “brute force” thing to think of a word, “I know it has ‘ake’ in it. Bake? Cake? Dake? Fake? Hake? Jake? etc etc”

  • mamom11999
    2 years ago

    Newly diagnosed less than a month ago. I have been searching for words to explain why I feel so “dumb” and of course I cant seem to find them. THANK YOU for sharing this and finding my words I have been looking for!!!

  • Matt Allen G author
    2 years ago

    Wow, it took me like 5 years or so to get to the point that I felt affected MENTALLY (as in bad enough that I could not function as well), I can hardly imagine how frustrating that must have been!

  • mamom11999
    2 years ago

    In the last 10 months I went from managing a Home Care company (60 clients and 57 employees) to being completely lost and struggle to even manage my own affairs/appointments. So frustrating!

  • kamf52
    2 years ago

    Why didn’t my complete reply post? Is there a word limit?

  • kamf52
    2 years ago

    I first found out about MS when I went to doctor because I thought I must have had a stroke. I was suddenly ‘dumb’! Also trouble walking so a stroke? I was at first almost relieved it was MS. And that i didn’t just become stupid. I managed an orthopedics practice for 30+ years but over last several i noticed i just couldn’t think or remember or organize. I finally decided to take early retirement at 62. I was finally diagnosed 6 months later (if i hadn’t retired I would have been on disability but because i already retired i lost long term disability & life insurance

  • Matt Allen G author
    2 years ago

    When I was diagnosed all my problems were “physical”, if I also had cognitive issues I don’t know what I would have thought!

  • clsuhre
    2 years ago

    Me, too. I feel like each piece of information is in a brain cell, and all I have to do is open the door to the cell – but the doorknob is missing. I’ve usually been successful at negotiating the answer from a companion, and once they give me the word back, I’m OK, the doorknob is usable again. I have forgotten the name of my street, that of a famous musician (young guy, plays piano, from New Orleans… Oh, you mean Harry Connick, Jr?), the city my husband was in for a week on business, and the word “apprehensive” – which, ironically, I was trying to use while describing what it’s like to lose part of your vocabulary! It brings me to a screeching halt in my conversation, while I fish for a word I KNOW is there. While in college in the late ’70s, I worked for a few summers as a Nurse’s Aid in a nursing home. Had a couple relatively young patients with MS, and I have seen this happen to them, too.

  • Matt Allen G author
    2 years ago

    Good way to put it, that is how I feel, I imagine my brain is failing to make one light-speed synapse to link “me” to that brain cell with the information I want and KNOW is right there, just can’t seem to create a bridge to it!

  • KimberlyD
    2 years ago

    Thanks for sharing your story. I can definitely relate to this because you have described exactly how I have been feeling the last year or two. It is extremely frustrating to be in a conversation then all of a sudden you can’t find the right word to describe something or to even continue the conversation. Heaven forbid if I happen to get interrupted….That’s when I totally lose track of what I was even talking about.

  • Matt Allen G author
    2 years ago

    YES! I HATE being interrupted. I mean I always did but especially now because it totally derails my train of thought!

  • Joelle Buck
    2 years ago

    I “know” your frustration! Over the past 2 1/2 years I fell as if I have become a toddler who has every learning disability known to exist. You are quite young … I just turned 47 and I was blaming it on my age. I find myself so lost all day long. I can’t remember what day it is,than I can’t remem

  • Matt Allen G author
    2 years ago

    Yeah everyone would always tell me, “oh that is just part of aging” to which I would say, “I am only 22 and 1 year ago this was not a problem at all” or w/e age I was at the time

  • Sandy Richardson
    2 years ago

    Wow! You have written exactly what I believe. I had an extensive neuro psych exam to evaluate my thinking back when they were trying to diagnose me. When done they said everything was ok, I tested as low average. I explained that I previously functioned at a much higher level since I worked as an ICU nurse and as a flight nurse. It was hard to get anyone to understand that low average was not enough for me. Now I recognize I do not control this, unfortunately.

  • Matt Allen G author
    2 years ago

    I really hate how they do that. They don’t compare your function (cognitive or physical) to your own average, they compare it to the average of everyone else and so long as you are “average” on THEIR standards it does not matter how far you are from YOUR OWN average…

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