Cognitive Dysfunction: A Scary and Invisible Fight

I’ve battled Multiple Sclerosis for fifteen years. Over that time, it has affected my ability to walk, hold objects, and to see. It has also made me extremely fatigued and has caused a ton of pain. To me, none of those are as bad as the symptom I am talking about today: Cognitive Dysfunction (sometimes called Brain Fog or Cog-fog). This is the symptom that has stolen the most from me, from my job to friendships. It is also one of the least documented and most often missed symptoms of the disease, yet one of the most common.

As time with this disease went on, I’ve always known that there is a very real chance that eventually I won’t be able to walk (even now, walking is an adventure, and I even have a prescription for a wheelchair, though I fight against that). I always thought though, that I would still be able to keep working, contributing to society. I was a software engineer, I used my brain for a living. I thought, well, even if moving is tough, I’ll still be able to get code out or design or contribute in some manner. Early on, I just didn’t even know this could possibly be a symptom. I didn’t remember any doctor mentioning it. I didn’t see it in any of the pamphlets I was given.

As I look back, the issues started occurring after one particularly bad relapse. I didn’t really realize it at the time but I started having more and more trouble with my memory, with my attention span, with being able to “figure things out”. Even though the relapse was over, damage was either done or still occurring (a few years later, I would learn that I had transitioned into Secondary-Progressive MS). Still, even with a variety of issues, I carried on like normal, even got a new job. Deep down I knew I wasn’t what I was, but I was still good enough to be decent at my job. Then things really went off the rails – I had a couple weeks at work where I don’t even know what was happening. At times I didn’t even know where I was or what I was doing. One day I realized it and told my boss I needed to talk. It’s all pretty hazy still but I remember coworkers that day saying that they certainly noticed something was off. Code I had written in that timespan in no way resembled anything I had done before.


It wasn’t long after that that I was with a new doctor and being tested for cognitive impairment. I had a lot of memory impairment, attention issues, slowed processing speed, and some trouble with spatial relations. There are times when I can’t remember things and yes, many people have that issue but trust me, this is more frequent and severe. At times, I can’t remember simple things, like debit card pins, how to get home, how to drive, friends and family members’ names and faces (think for a second how awful and scary that is), what I was doing, etc. It isn’t all of the time but it is exceptionally frequent and will get worse when my body temp increases or I am tired. Even writing an article like this is a multi-day affair for me.

I was once a voracious reader. Now, reading has become a major hurdle for me. I am constantly trying to read books these days, but if I am having issues that day, I will read a page and just during the time it takes me to flip to the next page, I will no longer remember what I just read. I then go back and the process repeats. The last book I finished, I probably actually read four times or more in the process of trying to get through it once. The same issues occur with simple things like watching TV. If I am having a bad day, a commercial may come on and I’ll lose everything that already happened on the show. Sometimes, watching sports is nice for me because there is usually a scoreboard on screen that is crammed with information allowing me to catch up.

Social interactions can become an issue as well. Not only will I lose faces and names, but I will get lost in conversation. It isn’t that I am not paying attention, I probably pay closer attention to those talking to me then most people do. I simply have to. But I will still lose it. Sometimes it’s a distraction that will cause it (a reason I hate loud and crowded places) but other times it will just happen.

These types of issues can really lead to some frustration and depression. Just the other day I had to say to my wife “wait, your name is…”. I was in such a moment of confusion. I knew she was important, I could “feel” it but just finding the details in my mess of a damaged brain was hard. That kind of thing is hard to deal with. It’s easy to get angry at yourself because of it, even though you can’t control it. It is probably easy for others to get angry at you as well. Can you imagine if I had done that and didn’t have such an understanding wife?

I have good days and bad, filled with good moments and bad moments throughout the day. I try to battle it all by still trying to read, doing online brain exercises, and most recently, by working on building block sets (a doctor suggested I do this, start building Lego or Mega Blok sets, and it has actually be very, very helpful as a cognitive rehab). Cognitive dysfunction is still a symptom that isn’t well known (it was 12 years before I knew it was even a possible symptom). We always talk about how MS is an invisible disease, I hope I’ve helped explain what one of those invisible symptoms is like.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (21)
  • Dogtooths886601
    3 years ago

    Hello,

    I was directed by yourself to this article from ‘the peril’s of showering ‘.

    As I hope you can tell, I am even further down the ‘coming to terms with the diagnosis ‘ Road.

    It is good to see that these issues are being discussed. It is also great to see that many of my problems are shared experiences. It is odd to see that these (what I previously thought as being) ‘flighty’ or ‘forgetful’ moments are actually part of the disease. It begs the question, as I am sure that you have continually asked yourself, what sort of person would I have been without Ms?

    However, (sorry) I must reiterate in my rather British way that I must continue to try and live with under the pretence that this disease’s symptoms must be negotiated. I know I’m being naive and green and even in extreme denial but I seem to feel that this can be done. I am someone who has seemingly developed strategies to avoid relapses. I have strengthened my social skills (in retail and bar work), I defuse confrontation and have recently placed a teaching career on the back burner. I am 36 and only just had my first ‘acute relapse ‘. Maybe I can avoid further relapses by avoiding stressful, reading and physical careers? Hence, a rather controversial move to driving instructor – uses my social skills and I can sit down – Haha.

    I seem to be either a brave or cowardly sufferer of the disease – but I know I’ve lived with brain fog for several years and my reading recognition has always been terrible. I, however, seem to have an above average ability to draw inference from texts (side note- perhaps this is an enhancement of other senses that other disabilities experience?). This made me an exceptional historian- texts that many people struggle to comprehend. My point is that, perhaps naively, that I can continue to avoid relapses by not stretching certain functions that seem to cause fatigue and triggers.

    Again, an excellent and intriguing article and I hope you will forgive my naivety.

    Kind regards
    John Pawson

  • Devin Garlit moderator author
    3 years ago

    Thanks again for reading. Perhaps you can avoid further relapses (indeed, some people have very few relapses). Relapses or not, it’s good to focus on having strategies to deal with your issues, just as you do. We can all lead valuable and fulfilling lives. I’m a firm believer that being able to identify and accept the issues we have (I’d say everyone, regardless of disease or not) and then adapt to those issues makes that possible. Just as you’ve done.

  • shebajd1
    3 years ago

    I just found this post on Twitter. The beginning of my MS issues were actually cognitive, years before my diagnosis in 2006. My first issues were that I couldn’t remember where I put things; for instance if I put my keys down, I couldn’t remember what I did with them. Worse, I couldn’t remember where I had been to even know where to go back and find them. Sometimes I would even forget what I was looking for! In 2000, I was in school in a doctoral program, and by 2002 I was having problems where ideas would disappear down a black hole. I thought I was experiencing early onset Alzheimer’s disease. It was so frustrating. I was finally diagnosed in 2006, and 9 years later, I still haven’t finished that dissertation. The only thing that has kept me going is my job. I work as a project manager, and for some reason, I can still do my job, although I doubt I could handle anything too demanding. If it wasn’t for that I would have to be on disability because my walking is severely impacted and I can no longer travel to work. Fortunately, I can work from home full time. I truly understand what everyone has said in this post: cognitive dysfunction is the invisible symptom that can be the most frustrating and the hardest to explain. While my husband understands most of my symptoms, I think this is the one he has the hardest time accepting. If I do something that seems weird or should be “common sense”, he doesn’t understand when I tell him that I don’t always see things in the way he thinks I should. How do you explain that to people if they don’t have what we’re experiencing?

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading. It can be maddening to try to explain to someone. I’ve heard many a time “oh I forget stuff too” and they just don’t get it. That’s one of the reason I wrote this article, to help explain what it’s like as best I could so that I could share with family and friends and help them understand.

  • chalknpens
    3 years ago

    Thank you, Devin. You’ve written my quiet thoughts. I don’t know how to explain my shortcomings to others. I’ve been diagnossed for eight years, took DMD injections for four and have reached senior citizen status. I was a teacher for thirty years, and then one year couldn’t recognize my students as mine, and retired. I loved reading but now am very limited. I loved writing but now simply type shorter pieces. My handwriting is no longer my own, and my spiral notebooks in which I could write for hours are now put away, somewhere. I used to be organized and multi-task but now can go to the kitchen for a glass of water and cut a piece of cake instead. All of my symptoms are invisible, and people area beginning to think I am antisocial, or rude, or inattentive, or just dull. It is heartbreaking. But I cannot complain … will not complain. I am loved by my husband; he understands it all, remembers me as I was and still loves me as I am. What more could matter?

  • SJ
    3 years ago

    Thank you, Devin, for this article. I was programmer for almost 20 years and had noticed that I was starting to struggle in my job years before I was diagnosed with MS. I thought maybe I was depressed, or having a midlife crisis, or maybe it was just empty nest syndrome.
    I hate the physical problems MS has caused for me, but I really mourn not being able to handle the job that I loved and did so well at. I have a good job now, thankfully, but it feels so dumbed down compared to what I used to do. I had cognitive tests with a neuropsychologist and he said I scored well above average on most. What I couldn’t get him to understand is that a few years ago I would have SMOKED those tests. I told him that I was a member of Mensa and that all these things I was average at now I could have done in my sleep at one time. He didn’t seem to think there’s a problem…. so frustrating.
    I try to stay sharp and read and do other brain exercises, but it feels like a losing battle too many days. I’m thankful for my Kindle app so I can search for a name when I can’t remember who a character is. Now I just need to figure out how to remember names of my kids and my dogs…. I hate feeling so betrayed by my own brain!

  • Constance
    3 years ago

    I can surely relate to your struggle. Thank you for writing on this problem; I’m losing my writing ability and patience as well. It is scary, invisible and unrecognizable by anyone but us.

  • north-star
    3 years ago

    I have learned so much in this discussion, thanks for the post and comments. It’s been a hot summer in a place where the weather changes frequently and where heat waves are unusual. The affect has been cumulative, even if the day isn’t a scorcher, the cog fog stays. Like the stories you shared, I’ve been aware of mild disfunction, but this is ridiculous. I can’t spell, remember words, especially names. I’ll make a comment about something, if I have to repeat it, chances are my brain has lumbered away from the topic and dumped my short term memory into a black hole. I, too have looked up Alzheimers and hope it shows up on an MRI because my scan was okay.

    I used to be sharp, quick thinking and generally capable person. I was the person who could make something great from nearly nothing. A leader who now has lost the filter that keeps me from saying embarrassing things. The cognition MS symptom is the hardest. I sure hope it’s a temporary one. If it’s not, as Carol Jean says, it’s going to be so hard to explain. I can already see cognitive changes are making me sad like she is. I’m sorta kinda relieved it’s MS AGAIN, and not my doing. But I’m losing what made me and i’m sad.

    My family is mostly baffled when I struggle to get the word I want during a conversation. How do I relate to people who think the old me is still there? Maybe Carol could show her daughter the article and these posts.

  • Carol Jean
    3 years ago

    I really needed to read your post today. I, too, suffer cognitive difficulties and had to retire on disability in May, 2014. I practiced law for over 20 years but could not do it any longer. I was diagnosed with secondary progressive MS at the age of 60. It has been a very hard transition for me, physically, financially and emotionally. My grown daughter (44 yrs old) has lived with me the last 2 years, which has really added to my stress. Today was especially hard as I heard yet again from my daughter how I am no longer who I used to be…that I need to learn how to handle my emotions better…that I act like an Asperger’s person who can’t control themselves…that I obviously just want to be unhappy…and that I am just sad. Does anyone else have issues dealing with their family members when they are having a bad day with symptoms? I just feel like when I am at my most vulnerable, that is when I am the most alone. Your article helped me know that I am not alone. Thanks. Carol Jean

  • Adriann
    3 years ago

    Thank you for sharing this fact .. My brain feels the loss as well .. When I sought help I was not believed .. Still not .. I can write up a storm when the timing is right !!

    It is when I am confronted by “Noise” that I lose all ability to focus .. Names, words and focus go out the window ..

    I find it worse than just Brain Fog , as I feel the “noise” in my head that I must get up and leave the room to a quiet place ..

    To think and recoup myself .. Never rude about it , of course, and all the time with a dopey smile on my face , but it robs me of my that sense of “who I was” ..

    This will happen more in certain environments , doing shopping, running errands, extreme heat or cold , extreme fatigue/tired ..

    There is no quick fix other than resting my brain and prayer .. Hey !! But I am still here !!

  • Adriann
    3 years ago

    BTW .. Since my last undiagnosed Relapse in Feb. 2014 , I insisted a MS Neuro do an MRI .. So he did .. But only of my Brain not cervical spine ..

    Okay .. It did show a mess of lesions and a benign tumor in the cerebral fluid in the 3rd or 4th ventricle portion of my Brain , his attitude .. No worries ..

    Since this MRI was taken in Oct. of 2014 all was calm and THIS doctor had nothing to compare it to , he refused to get any records from the previous Neuro which would have shown MRI from just the year before when I had a relapse .. hmmmm , guess I am in the wrong area for MS .. Faith as I am a not giving up or in , never have or will .. Peace

  • 1k190en
    3 years ago

    Thank you so much, Devin, for sharing your story regarding Cognitive dysfunction. I also was diagnosed with cognitive abnormalities. I was a Court Reporter for 15 years, and I could easily spell any words in my sleep. But one day, very early on after my diagnosis, I tried to spell the fruit, papaya, in my head and I just couldn’t. Then, the other time, I picked up my kids from school, and while on the freeway, I drove into a tunnel that I’ve driven 1000 times. But on that particular day, once I drove out of the tunnel, I panicked because I could not recognize where I was. I insisted with my doctor that something was terribly wrong with me. After doing some tests with a neuropsychologist, I was rendered disabled to continue my position as a Court Reporter. We, MS, patients know our capabilities and weaknesses. When we notice something is wrong, trust your instinct and get help.

  • qudeuk
    3 years ago

    I was wondering how do you explain to people about how one day you know something and the next you don’t? Everytime this happens to me I feel like people think I’m either lying or just nuts.

  • 1k190en
    3 years ago

    I think that some things about MS, it does not matter how much explain it, some people just won’t understand. Our symptoms are not just a headache or a toothache, or something that people can relate to. I would try to avoid trying to explaining symptoms to non-MS patients. Only go into it when you need to and to people who matters.

  • Kelly McNamara moderator
    3 years ago

    Hi Qudeuk. Thanks for commenting and for being a part of our community! One of contributors calls her cog fog moments “broken brain filter.” She says it best, “My friends that have MS, understand what I mean when I say, ‘Sorry, was having an MS Moment.’ But it’s hard to explain it to those who don’t ‘get it.'” Here’s two of her article about cog fog: http://multiplesclerosis.net/living-with-ms/broken-brain-filter/ and http://multiplesclerosis.net/living-with-ms/cog-fog/. Best, Kelly, Community Manager

  • Janice
    3 years ago

    I wish that cognitive dysfunction was talked about more and considered a more serious side of MS. I don’t have physical problems but only cognitive. It is embarrassing to sit next to someone you know but can’t remember their name. I can get lost in a store that I have been in hundreds of times. I am finding that it isn’t so much you don’t remember but the processing speed in you mind has been slowed down so much you can’t think. I hate to even say I have MS because no one can see what is happening in my head. I always say it is all in my head which does not say anything good about me. I can’t get any answers about why studies aren’t done with drug therapy that may show that it helps with cognitive problems. I only tried Rebif but after 3 months I had to stop because my depression got so much worse. My symptoms aren’t physical which is what is the most studied with drug trials. I don’t trust any drug therapy because it could make me worse. I don’t like to crowds or loud noise (4th of July is a nightmare) because I can’t take it all in without feeling totally overwhelmed. I went to a movie recently and I thought I needed to get up and leave because the sound and trying to watch a huge screen and all the movement was impossible. I don’t even remember what the movie was or anything about it. I like reruns on TV because I remember some but it is good to get answers the more you watch. The only thing that gets me through the day is routine, routine, routine.

  • pmm
    3 years ago

    Wow, I can strongly empathize with the author — thanks for writing this story, Devin. Cognitive issues (and physical fatigue) are by far my most difficult challenge so far. I am 49 yrs old, was diagnosed with possible MS 3 years ago (I’m on Copaxone), had only one attack in my life that could definitively be attributed to MS (optic neuritis, 18 years ago), and I don’t really have the “relapses” that others talk about. But gosh, is my cognitive health taking a beating. I noticed the decline in my early 30’s, around the time of my optic neuritis attack, but the decline has accelerated in the past couple of years, along with almost debilitating physical fatigue. I am an astrophysicist and a NASA project scientist for a major science mission — every day, I am confronted with the need to think on my feet, solve problems, remember the names of the many people on my science team, and even (on occasion) to be able to talk about technical concepts to news reporters, sometimes on video where another “take” to correct a fumble is just not possible. With each new day, I sadly wonder how much longer I am going to be able to satisfactorily perform my job. No one at work, with the exception of a few close friends, knows of my medical diagnosis/situation. Like you, Devin, I’ve had moments of confusion in which I too have forgotten the name of my husband. The fear that “this” is something worse than MS has often crossed my mind, even though the neurologist assures me that I do not have early-onset Alzheimer’s. Given that I often struggle to find a word in mid-sentence, or lose “where I was going” with a point in mid-conversation, am seriously challenged by trying to organize my office or my schedule, or feel overwhelmed with calculations that I could easily perform 5 years ago, I can’t help but wonder how often my colleagues wonder how a seemingly-slow person like me ever ended up in the position that I currently hold.

  • fedupandconfused
    3 years ago

    Wow this resonates so much with me too. Well before my legs started giving way and walking became difficult, and the numbness and hot spots, all those “visible” or “feeling” things – I started to experience the cog fog. The problem is I put it down to absentmindedness until it gets to a point I just knew it wasn’t *normal* and because I have better days where I can write coherently and eloquently it deceives me in to thinking I’m oK and it’s in my imagination. Then I have the days where I’m fatigued beyond words, can’t remember words or what it is I want to say and certainly can’t remember names of friends or family. Spelling goes out of the window and I’ve started recording programs as I can’t remember watching something even when I’ve just sat through it. I can no longer rely on my memory and have lists everywhere and multi tasking is no longer an option. I used to pride myself on all those things, having gained a Masters degree and worked as a Project Manager ,these days I can barely remember what day it is some days. So the best way of dealing with it is to no longer mourn who I was but instead recognise this as my *new normal* and find ways round it. That way I don’t drive myself crazy. Thanks for sharing your story as it really helps to know we’re not alone. All the best and thanks again it’s really appreciated.

  • jekt074
    3 years ago

    I can truly empathize, since I have the same cognitive issues. Having been a teacher for 30 years, I can feel like a blithering idiot. Compounding the problem is the fact that I was diagnosed at 59 yrs. old and I am now 63. I often feel like I must be on the road to Alzheimer’s, but I can’t be sure. I even attended a session on the 10 signs of Alz, and believe me, MS Cog Fog is incredibly similar. When I brought up the issue with my GP and my neurologist, they both dismissed it by telling me that I seemed completely verbal and functional to them. In this article, the sentence with which I identified was this: “It is also one of the least documented and most often missed symptoms of the disease, yet one of the most common.” That is so true! What can we do to open the eyes of doctors as well as friends?

  • JulesPMH
    3 years ago

    I’m 37 years old and have been teaching English for 14 years. (I’m an MS caregiver for my husband, but can relate to much of what he goes through & the discussion as a chronic pain sufferer – the invisible disease syndrome and cog fog especially – and everyone has been very sympathetic when I post, so I hope you don’t mind.
    I finally got my neurologist to refer me for neuropsychological testing. Like you, I was told I appeared “highly functional” in most areas and even in areas where my numbers were low my scores still placed me at “average functioning” levels. The problem is that I am not near what I was or should be. I was always extraordinarily high functioning. Now, on a good day, if I can string a sentence together fluently, that’s high functioning…but if you read the rest of these posts – teachers and NASA scientists and engineers, oh my! What others are calling “high functioning” is not the what we would call it.
    There are two options: the first is to get tested at the FIRST sign of cognitive symptoms, so as to measure progression of decline. For most, the ship has sailed on that one…
    Some neuropsychologists will take past documentation into consideration when evaluating your test results and completing your profile. These can include writing samples, test results, IQ, evaluations, or anything else that documents PAST performance that you feel has since declined. (It may look just great now, but if you have documented evidence that it was fan-FREAKIN-tastic 5 years ago, “just great” isn’t good enough…)
    I’m looking at going on disability next year…can TEACH till the cows come home…but can’t keep up with the paperwork. )c; You could say I’m devastated…
    Thanks for posting and for the article!

  • cw
    3 years ago

    I can empathize with all of you too. Trying to introduce my grandson to friends and I couldn’t for the life of me remember his name. I can site millions of examples. They wrote it off as depression from the MS. Was cognitively tested and my scores were way off and when tested again they were even further down. Tried cognitive therapy but doesn’t seem to be doing much. I try to keep doing puzzles and such but just getting more frustrated. They really need to realize just how much of an impact cognitive dysfunction is. Time to wake up the doctors.

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