Skip to Accessibility Tools Skip to Content Skip to Footer
My Cognitive Collapse

My Cognitive Collapse

Glimpses. Occasionally, I see glimpses of the mind I once had, when things seem to be clicking again. These moments are reminders of a time (since passed) when my cognitive abilities were great enough to power me through advanced schooling and to excel at high levels of a technical career. I was extremely lucky to have the abilities that I had. Now, after years of battling with cognitive dysfunction because of Multiple Sclerosis, I only have rare moments when my brain feels like it’s hitting on all cylinders. Many people will talk about moments of “cog fog”, but it’s more than mere moments for me. While I do have times where my mind is foggier than normal, I also am very aware that it is almost never as sharp as it once was, except for those infrequent moments of crystal clarity that seem to come out of nowhere. Of the many symptoms I’ve experienced because of MS, my cognitive problems are the ones that trouble me the most.

It took time

I didn’t experience cognitive issues right away. It took about ten years with the disease for them to show up. Eventually, I had enough exacerbations that somewhere along the line, just the right areas of my brain were impacted. Even then, it wasn’t until my last really big exacerbation that I started having some exceptional difficulty. Those issues began taking their toll and started affecting my work. My cognitive problems are partially to blame for forcing me on to disability. Turns out that having your brain functioning properly is pretty important to being a software engineer. A career that I thought would be fine for MS, because I never knew that some of these cognitive problems were even a possibility with this disease. Not expecting these symptoms made their sudden onset incredibly disturbing to me. Did I actually have Alzheimer’s or some other condition? My doctor at the time (one of many, many I’ve had over the years) explained to me that these were legitimate symptoms of Multiple Sclerosis.

It’s more than fog

So what happens? Well, the term “fog” really is a good one. I feel “foggy” in my head a lot. It’s a hard thing to try to explain. I have many moments when I’m not thinking clearly or logically. I’m maybe able to recognize this a bit more easily than some, because my career was heavily focused on logic. I also LOVED logic puzzles and games, and I was good at them. These days it’s rare that I can pick up one of my puzzle books and get the right answer. It happens, but it’s unpredictable. I also, almost overnight, started experiencing trouble doing math (another key part of my career). I started forgetting things too, a lot of things. Not only stuff I had learned throughout my life, but also short term items. I’d also forget things that I knew and used everyday. There were several times where I, for the life of me, couldn’t even remember my roommate’s name. This is a person who I knew for a decade and whose name I used multiple times a day. I would look at her and no matter how hard I tried, I couldn’t get her name. Similar issues, like remembering my bank card pin number (which hasn’t changed in nearly 20 years) began to plague me.

Attention and the way it affected my memory became a problem as well. Getting interrupted often means completely losing my place. It also means forgetting what I’m doing. A commercial will come on and I’ll then forget what I was watching or what was happening in it. This became a huge issue when trying to drive and was one reason I had to give that up. I went from someone who excelled at multitasking to being someone who, at times, can’t even have another sound in the background when trying to work the microwave without forgetting how to use it.

It’s different

When I say I forget something or can’t figure something out, like many MS symptoms, I often hear a lot of “oh, I forget a lot now too”. One of the big reasons I try to write about cognitive issues so much is that’s it’s not the same. It’s not simply being absent-minded, it’s not just getting older. There is a legitimate change and deficiency that’s been measured in me. So when someone says the old, “me too” and they don’t have MS, it feels dismissive and extremely frustrating. I also talk about cognitive symptoms a lot, because they are relatively new when it comes to recognized symptoms. Even today, some doctors aren’t up to speed on the latest research and that it is in fact a recognized symptom of Multiple Sclerosis. So getting the word out and advocating for others who suffer from these symptoms is very important to me.

It’s terrifying

I also talk about these issues, because for me, they are the scariest of my problems. I’ve woken up and been unable to walk, been left with blurry vision so bad that I can’t see at times, I suffer from severe fatigue and heat intolerance, and I encounter a lot of searing, burning pain throughout my body, all because of MS. Having the disease alter the way I think, essentially, altering who I am, is absolutely terrifying to me. It’s my most despised symptom, and the one that’s altered my life the most. It’s something I need to share with others, because I need to know other people understand, and I need them to know that I understand as well.

Thanks for reading!

Devin

My Other Articles On MultipleSclerosis.net Follow Me On Facebook

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

  • redrider2
    4 weeks ago

    Thank you for sharing on loss of cognition symptoms.

  • mstini2013
    2 months ago

    I too was forced into disability. I’m a nurse, and was becoming not only forgetful, but easily distracted, not reacting fast enough. It was a bit depressing, the loss of my career that I had worked so hard for. I too was wondering if I had early onset dementia or something. I have been reassured to no end that its MS symptoms but it still weighs on my mind. I’ve settled nicely into disability mode, I feel better without the job stress on a daily basis. My best description of cog fog is this: it feels like I’m standing on a dimly lit street, alone. It’s the worst rain storm ever, and fog is rising up from the heat of the pavement making it difficult to see and the sound of the rain is so loud that it’s hard to think. it’s like I’m the only one experiencing it so there’s no where to run, no one to turn to and all I can do is stand there and wait for it all to pass.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @mstini2013, I really love that description of cog fog. It’s very fitting!

  • OliviaJ
    10 months ago

    A welcome column on a day when I was seriously thinking of chopping my right leg off because of the relentless pain. But if I did that, my left leg would certainly start up. I also have a report to read before a meeting on Friday. It’s the sort of report that requires all of my cognitive power, which isn’t much. I wish me luck!

  • weezy
    1 year ago

    Devin, Thank You! Your articles are right out of my experiences with MS! I thought for a while that I was the only one with severe cognitive problems. No one tells you or warns you about what is coming. It is a daily challenge and I’m NOT giving up! I like to refer to my brain as a computer that is having trouble accessing the correct hard drive!

  • cris
    1 year ago

    Once I can get my thoughts together I plan to share my journey, as I’ve found all I’ve read so helpful, and I’d like to return this gift.
    I’ve been taking Provigil and was hoping it would help ( paying out of pocket because my ins company keeps rejecting it). There are so many variables I can’t seem figure out whats coming from what . Provigil May be increasing my anxiety I believe.
    Love to everyone and thank you

  • Alina Ahsan moderator
    1 year ago

    Hi cris,
    I’m so glad that hearing from others has helped you along your journey with MS. We would love to have you share your story when you’re ready, and I wanted to leave a link for you here for a place to add your story and read more: https://multiplesclerosis.net/stories/ I’m sorry you’re having difficulty managing your fatigue with Provigil and experiencing anxiety! With all the different medications to treat MS symptoms, it can be so hard to keep track of the different side effects from each individual treatment! I hope you find something that works for you soon. Let us know how you’re doing!
    -Alina, MultipleSclerosis.net Team Member

  • cris
    1 year ago

    Thank you 🙂

  • cris
    1 year ago

    I want to thank you for sharing all of you helpful information regarding MS and cognitive functioning. This has been my most major symptom and has gotten progressively worse …naturally so horribly frightening. Reading your story I found myself saying “this is it, this is me”. I also have severe body aches at times and visual disturbances. The diagnosis for me is new and as you can imagine has caused worsening symptoms. Sometimes the slightest sound throws me over the edge. I’ve read so much of what you write and I thank you for sharing.

  • Shelby Comito moderator
    1 year ago

    Thank you for commenting @cris. I am so sorry to hear what you’re going through. I can imagine that must feel frightening and you are certainly not alone in these experiences. I’m so glad you found a little solace in Devin’s article, and I appreciate you sharing here. We are thinking of you and are so grateful to have you in our community! Warmest wishes, Shelby, MultipleSclerosis.net Team Member

  • Spratt
    1 year ago

    Thank you for this article! As I read it, I kept thinking, “exactly!” Years before MS, I actually went to the doctor because of feeling “foggy” and being so tired. He prescribed depression medication, which I did not fill. So, on with life until 20 years later when I couldn’t walk straight. After a year of testing came the MS diagnosis. Thinking back, brain fog was probably my first symptom. It hasn’t been bad, except for the searching for words and no longer able to multi-task, until a few days ago. My husband and I were at a restaurant with friends. After the meal, I went to the restroom. When I stepped back out, I couldn’t remember which restaurant we were in or how to return to my table. Luckily, it was close enough to the restroom that by standing there a moment I could see my husband within my range of site. And then the “oh yeah”. I’ve always been independent and frequently traveled alone. I hope this isn’t the beginning of the end of that independence. I am not going to complain because my diagnosis came at age 59. That was five years ago. Even if it was “stewing” over so many years, I’m thankful it didn’t rear its ugly head until I was older.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for sharing Spratt. I think there have been many people who have had cognitive issues as an initial symptom and have sadly had it dismissed. There are still so many doctors out there that don’t really know about or understand some of the most common symptoms. Sadly, that’s a huge reason why so many people have trouble getting diagnosed.

  • ec76ox
    1 year ago

    Mr. Devin, thank you so much. You have said exactly what I would, if I could articulate it. I have not been diagnosed w/ MS but w/ White Matter Disease. No doctor seems to take me serious. I am being treated for anxiety & is it any wonder w/ no one listening. I am supposed to have a cognitive evaluation in 2 weeks & I am hoping that will provide some answers. Is there any particular test or doctor that I could request that might help. I have other MS-like issues, but the cognitive have been the most life altering. Yes, I am desperate, bc I FEEL my mind slipping & no one is doing anything about it.

  • chong61
    1 year ago

    ec76ox,
    I am new to the site and just saw your post. Ask your neurologist to run an MRI. If you have MS, it should show areas of lesions, which I would say they are calling it white matter disease. A lot of the time it starts with your eyes as MS causes optic neuritis.

    Unless you have a neuro that specializes in MS you are not likely to get any other doc to give you that diagnosis. I think that is because MS is so different in every patient and they can’t say for certain because they don’t want to run the risk of being wrong.
    I spent over 30 years battling pain, dropping my cup or glass because my hand just let it go. Also, headaches that were on a 1-10, mine was a 50. Stumbling even on even surfaces. Short term memories. I was told I was having mini strokes, told it was just my nerves, and on and on.

    The key to my diagnosis came when after years I finally mailed tons of test results, letters, begging and I finally got taken as a patient of a neurologist that specializes in MS and they have several docs in the MS Center. That was the day when I got back to my car I just fell apart. My poor husband thought I was crying over the diagnosis when actually I was crying because I did get that diagnosis. Now, I geared up as best I could and when anyone was told I had MS, it triggered the old line of “but you look so good.”
    You will have to toughen up because you are never going to convince them what your body is doing. You will have days you just sit in one spot all day because you do not feel like doing anything. MS treats everyone different so we can’t know what each other goes through. But, we have a good idea.
    3 years ago I lost my husband of 58 years, he just got sick and was dead in 5 hours. When I managed to stay as good as I could for my children, I knew I was going to have to live alone, but I have a Pomeranian and he became my crying buddy and we are taking it one day at a time. By the way I am 76 years old. Please know I feel for you and hope you find a doc that will listen to you. It took me 6 docs before I got where I needed to be. Please add me as a friend and let me know how you are. I really care.

  • Devin Garlit moderator author
    1 year ago

    I’m so sorry to hear that ec76ox, so many doctors are not as up on the latest medicine that they should be. It’s often easier to diagnose depression and anxiety (which are symptoms of other issues as well). The number one advice I can give to anyone, diagnosed or not, is to keep fighting and advocating for yourself, keep searching for the right doctor. It is not easy, but so important. https://multiplesclerosis.net/living-with-ms/doctors-reminder-advocate-yourself/

  • Carol
    1 year ago

    Devin,

    Thank you for a terrific article. I can certainly relate to your article. Including about not remembering how the microwave worked last night. I really regret losing the cognition, it’s hard to get along without it. It started out for me gradually, but then sped up and I had to leave my job after almost 30 years. I still feel kinda lost without it. And, I am not able to communicate with my friends and I think they left me because I didn’t make sense sometimes too many times. That makes me lonely. Then, I can’t get out and do all the things that I used to enjoy. This is not how I was expecting things to go.

  • Devin Garlit moderator author
    1 year ago

    Just wanted to thank everyone again, I try to personally get to as many comments as I possibly can. No matter what you have to say, I appreciate you taking the time to chime in! I do read every comment, I simply don’t always have a chance to reply. But please know that I do read them, and I appreciate all of them! Thanks so much!

  • HE2S
    1 year ago

    Wow. I’m not crazy then…
    I hope not anyways. I had my first relapse and diagnosis a year and a half ago. I feel I’m still recovering my personality and mental capacities, but it’s a rollercoaster. My memory is shot, memories feel like someone else’s, though that’s improving.
    I used to read a lot. Not really interested in reading at all any more. It took a long time before I could watch TV and actually understand what was going on.
    I can’t do anything technical any more. My brain actually seems to shut down if I tax it. Nausea, extreme nausea. That’s been my main ms symptom. All due to me being unable to process info I think.
    Anyways, sorry for rambling on. I’ve been trying to explain what’s going on to my docs and colleagues, without a lot of joy. I was actually starting to think I might be crazy till I read your article. I am not alone.
    Cheers.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much HE2S, you most certainly are not crazy! These issues plague many people with MS, but are seldom discussed!

  • dkp1
    1 year ago

    Devin, This is such a beautifully written piece. Clearly, there must be some clarity for you to have explained cognitive issues. Thank you.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much dkp1! I very much appreciate that!

  • Danelle
    1 year ago

    https://hopevictoryoverms.blogspot.com/?m=1

    Start by looking in the mouth. Metals / root canals.

  • itasara
    1 year ago

    For me, I do question how much is MS and How much is getting older. My husband is 73 soon an engineer and a physician and he sometimes has trouble remembering certain words certain numbers, where he puts his keys or other items.He does not hqv MS and I’m sure he doesn’t have Alzheimer’s. I also had trouble remembering certain names certain events and then if been all that good at math I More about it and prefer to use electronic calculator. And yes I think some of what I have kind words remembering certain words that I want to use remembering the names of certain people, memoizing anything does have something to do with rd MS but I too am now at the age of 70. I was dx’d almost 14 yrs.ago So I agree it is different but yet hard for me to distinguish between the two.

  • Wayneh143
    1 year ago

    Dancing with the MonSter!

    Saturday, September 29, 2018
    1:21 PM

    Mobility, Cognition, mood, fear, anger. The tip of my MS iceberg. I am sitting in my home, listening to a smooth Jazz YouTube channel on my TV. I break occasionally to goto the bathroom, (oh did I mention bladder issues?). I am not home bound, but I prefer to stay home for variety of reasons; mobility,(I use a walker/rollator), cognition, mood, fear & anger, and let’s not forget the ever present bladder! I have thoughts and desires to be more active but reason, (ill advised maybe), and especially fear, (maybe overexaggerated), can find a way to rethink, halt and/or postpone the thought of doing even the simplest task.
    Several weeks ago I did something I haven’t done in quite a while, felt the unfogivable effects of gravity! Soreness and damaged pride was the outcome. I did not share the experience with my caregiver/wife, (avoiding a possible lecture maybe), probably!.
    On a positive note, I believe that I am working myself out of my recurring depressive periods, possibly relating to a pre-DX’ed time, but there is still quite a bit of underlying fear, primarily gravity, (falling), and displaying weakness in the herd! I know that may sound somewhat absurd to some but I live in NYC and being out and about in the city makes me feel very vulnerable. I guess I should stop watching so many animal shows where the weakest in the herd is ususally the meal for some preadator, (and/or their pack, pride, family, scavanger)
    I have survived going out, going on vacation and participating in some social programs, (mostly MS related). I know that there more things I could and should do, (and I do plan some), but I can always justify some reason not to.
    Friend, real social friends are extremely few to non existant. (Oh, did I mention that I am 69 and retired?) I am not very good at making close friends, and the few I do have are geographically challenging! I can be social, but bonds do not seem to be easily developed. (I have deep trust issues!)
    End Of Rant! (for now!)

  • Alexis
    1 year ago

    I can totally relate. I was in college when I was diagnosed at 22. I graduated as an RN. Couple years later I noticed I started forgetting things. One day at work I was performing a test that I had done 1000’s of times but I had totally forgotten how. Let me tell you working in the medical field I needed a sharp mind because if I did not I could seriously effect some one’s life. I reported it to my neuro who sent me in fo neuropsych testing, When I got the results I found out my I.Q. had actually dropped. I had to give up my career that I worked so hard for and apply for SSDI at 26. Being so young I kept getting denied. When someone has a memory deficit it is labeled a invisible illness. I fought 3 years for SSDI and finally gettting it at 29. It was
    quite bittersweet. To this day 12 years later I still mourn for what would have been.

  • Shelby Comito moderator
    1 year ago

    Thank you for sharing a bit of your story with us @Alexis. I commend you for reaching out for support online, as it is not the easiest to do. I absolutely hear your grief. Dealing with the demands of a chronic health disease at such a young age is not only physically painful, but emotionally as well. I hope you find some solace knowing that in this community you’re not alone. Maybe these articles will provide you with a bit of comfort: https://multiplesclerosis.net/living-with-ms/trevis-gleasons-chef-interrupted/ and https://multiplesclerosis.net/living-with-ms/making-goals-important-despite-ms/
    Please keep us posted on how you’re doing anytime. Warmest wishes, Shelby (MultipleSclerosis.net Team Member)

  • maxx5crz
    1 year ago

    Hello Devin, I SO connected to your post on cognitive thinking,that is what finally convinced me to find out what was going on. Along with having spots in my eyesight when I covered one eye, getting lost when I knew where I was going, having a stutter when I spoke…but the cognitive thinking finally did it. I was an Associate Director of Food Service and Purchasing @ 2 locations all on the computer. One location had 7 different units and the other had 5. I never forgot to order anything until I forgot one item at one unit. I was already being tested for the other problems but with no diagnosis until then. My boss who I was very close with then called my dr. and said there is something wrong with her and you need to find out what it is. They then sent me for an MRI and MS was diagnosed. And yes it is the cognitive thinking that is what I always would like people to understand. Thank you for your post, it is helpful to know that others have the same issue. Debbie Walker

  • MsMyers
    1 year ago

    Thank you so much for sharing this, Devin.

    Before my cognitive issues from MS, my intelligence and my job in technology were a huge part of my self-identity. I had to close my SEO business because I was no longer able to absorb new algorythmic ‘rules’ for search ranking, and multi-tasking had become impossible. When I can’t learn or earn anymore, what AM I good for?

    I have come to terms with my personal challenges from multiple sclerosis, and I am grateful that many of my symptoms aren’t worse. But, I find it incredible important to live ‘in the moment’ — the uncertain future with MS is terrifying; remembering how smart and capable I used to be brings me to tears. I can’t help but mourn the loss of the ‘old me’.

  • Sbyrd2
    1 year ago

    Devin, You are not alone as a REALTOR, negotiating contracts became difficult names unable to say, wrong information given embarrassing myself. Destroying myself financially unable to still receive disability. Just in a horrible place.

    Sherry

  • Janice
    1 year ago

    It is so good to hear all the information that so many are having the same cognitive problems that I have and after 15 years of being diagnosed it seems to be getting worse. I know that my MRIs have shown that my brain is shrinking more than normal for my age but my lesions “are about the same.” It has been so frustrating that cognition, depression, fatigue and losing taste, hearing and eye problems have always been my problems and nothing physical. My physical problems are because my head takes away what used to be something I enjoyed and was fun. No riding a bike, tennis, bowling are working in the yard because my head will get me dizzy and I will fall down. I used to love to cook but now I can’t remember how and I will burn everything. Trying to cook more than one thing at a time which was so common is not even possible any more.
    I have done a lot of research “when I can” to learn that the cognitive issue is just now being something that is researched. There isn’t any drug therapy that has shown any help with cognitive issues but just using what is “a normal” drug for MS “will help.” WRONG! I have tried two different drug therapies and they only made me worse so I am not using any MS drug therapies and only use drugs to treat the problems that I have-depression being the worst. I have read that the cognitive problems don’t show up in a regular MRI because it is mainly in the gray matter that can’t be seen. It said that there is an MRI (fMRI) that can be used but it is expensive.
    I don’t like to leave the house because I can’t do anything except one thing that I make plans to do, like grocery shopping, but even with a list, and I have to write a list because trying to use my phone to make a list doesn’t work for me, I don’t always get what I wrote down. The hardest part for me is that I never thought at 64, life would be harder and not enjoyable. It is hard not to know who I am and what I can do. I do know that I hate MS and although I have tried to be positive I can’t find anything positive about it any more.

  • Bkboo
    1 year ago

    Devin, thank you for sharing. I can relate all to well on this debilitating symptom. It has changed me and Im still trying to sort out who the “new me” actually is today. I was involved in Martial Arts since 1976, danced and taught aerobics. Taught US history. In 2013, an MS attack effected my cognition, which I didnt think could happen! Silly me….It has changed me..I am on disability now…

    When people walk up on me I get startled and jump!! I forget things and boy I cant pay attention if there is someone talking to me and Im trying to do something else. Its exhausting…

    Yes and I am so frustrated and tired of people saying, me too, its age… blah blah blah..ugh! They haven’t a clue!

  • Scotty00
    1 year ago

    Devin, thank you for sharing. I can relate to being interrupted and forgetting where I left off, making it take longer to do my job. Or needing a tool and looking at my tool box and have no clue as to what drawer it is in. I have been using the same tool box for 10 years. Thank you again for sharing and to everyone else that shared. It’s nice to know I’m not alone.

  • Alexis
    1 year ago

    Scotty00, Yep my mom always interupts me when I am talking and I get mad at her because I will totally space what we were talking about. I now she does not intentionally do this. But it is so frustrating!

  • Laura73
    1 year ago

    I knew about the cog issues when I got diagnosed and I can say that it has always been my number one issue. I had a neuropsychological test done in 2011 and another on done Monday to see how bad I have gotten. I also had to quit my job and I decided to work PT at Lowes but just had to leave that job his summer cause I couldn’t do that any more either. It does suck an I too hate when people say “me to”.

  • Flowers For Algernon
    1 year ago

    I understand completely. I was an IT consultant working full time for organizations such as Dell, VMware, etc. I had only recently been diagnosed with MS when I had almost the exact same experience you have outlined in your article. My wife actually sent me your article, jokingly asking if I had written it. Safe travels…

  • Julie
    1 year ago

    Back when I was married my husband would always say to me “you just told me that”! “you just asked me that”! He would become more and more irritated. I finally stopped asking or telling him anything.

    When I talked to my neurologist about my problems he looked at my chart. “you are taking a lot of drugs”. Yes doc, you prescribed them all. My dad passed 3 years ago. At the time I thought mom was just stressed when she spoke in confusing ways or didn’t remember anything.

    Then she was diagnosed with Dementia. As she has slid farther these past 3 years it frightens me. Is this what I’m headed for? I don’t know who I can talk to about this. My own doctor thinks it’s the drugs and nothing else. What a life.

  • SnowCap
    1 year ago

    Hi Devin; I understand.

    Try being a lifelong overachiever, a university professor, and a program chair, but suddenly struggle to complete projects, can’t cognitively see/find things right in front of my face, can’t remember what my kids just answered when I asked them if they wanted milk.

    I, too, had no idea that cognition could/would be affected. I wonder today if I just refused to acknowledge it, or if the info truly wasn’t out there. I think I’m glad I didn’t know, because that would have meant living in fear. I could live with the thought that I might end up needing a wheelchair, but to think that I would lose my cognitive abilities? Not possible.

    And yet, it’s happened, causing me to go on disability and even after 2 years, being able to barely manage a 1/4 position.

    Cognitive changes, for me, are a loss of my identity, and I’d rather be in a wheelchair than lose my intelligence. But unfortunately, many of us have no choice.

    I will keep contributing positively, and trying to accomplish what I can for as long as I’m able. But I have anywhere from 5 to 15 episodes a day where I can’t remember what the book I was reading with my son is about, can’t find my phone, can’t remember why I walked into a room, can’t figure out what street I’m on even though I drive the way often, etc. I get overwhelmed trying to plan anything and often mix up times for appointments, etc. It’s so frustrating, and so far from the person I used to be.

    Everything takes me 3 times as long as I estimate, and I’m pretty sure that I’m already estimating twice as long as I used to take. It makes me want to scream, often.

    So yes, Devin, I understand.

    Thanks for sharing, and thanks for your understanding!

  • flynace67
    1 year ago

    Devin, thank you for sharing this. I, too, was prepared for the physical shortcomings presented by MS. The cognitive issues were a different animal, though. Diagnosed 20 plus years ago, the cognitive issues have just amped up in the last 3 years or so. Searching for the right word and recall of names and too much detailed information are very difficult. Your comment on being distracted is right on. Many times, I walk to a room with purpose only to get there and suddenly not have a clue why. I always thought that at least I could spend down-time reading, but now I have to read and re-read several times before it makes sense. I know sometimes people don’t understand what I am trying to say. This constant cog-fog, as they call it, has been also been responsible for bringing the depressed feelings, angry and embarassed feelings, and anxiety that I used to never experience. I feel like an empty shell of who I once was. To me, the cognitive problems are definitely the most terrifying of MS symptoms.

    You are right that we need to share, though, and we do understand. Knowing that I am not alone keeps me from going truly crazy. 🙂

  • braindeadmom
    1 year ago

    Perfect timing…. 20years of cognition issues…… For me, the”brainfog” days are not the worst part. It’s the times when I feel like I’m thinking clearly, using all of my”coping strategies”, making sure I am being diligent, double checking…. Yep, feeling like my “ol self”. And then, “wham”, I discover I have forgotten some simple, critical thing, or made an error and have No Idea how I got there. It is devastating and demoralizing.

    It happened today…..

  • QueenieH
    1 year ago

    Your writing hits home more times than not. This cognitive problems -thing – absolutely terrifying. I also have had MS for a very long time – I knew in the back of my mind that I would at sometime get worse. Never did the cognitive symptom ever came up or crossed my mind, nor the mind/body numbing fatigue.

    My brain and my memory was my self defense. I am a 5’1″ female and my only defense growing up as I did and the few years I lived on the streets, the crazy life I lived was my brain…..

    My briain is what pullded up up and at one point I did 18 board meetings in 20 days. I could speak to anyone, I had no fear.

    Now I go home so embarrassed because my words do not come out right – or I could not remember the words. The people that meet me now will never know who and what was able to do.

    Now? Reading your piece here – talked to me, you put into words what I have been trying to say. Those flashes of my old self, then the next day knowing that I will not be able to show or tell how the finance reports do not match…

    I am scared – I am friggin petrifed – how will I keep up with everything? How will I protect myself for the insanity of my life…yes – I have heard all the advice – I am done with stupid advice after 30 plus years…

    Hiring people to watch over things, sounds really good….but it is only a job to them – this is my life.

    I have no idea if I make any sense at all and I cannot beleive how long it took to write this….

    I am just a bundle of joy – but just thank you and keep writing

  • MargaritaMaria
    1 year ago

    Thank you, Devin. My earliest experience of the cognitive challenges hit me as I was approaching the thesis phase of a very rigorous graduate program. I had been carrying a 4.0 average and getting incredible remarks from the profs on all my papers. It seemed like it was almost overnight when, suddenly, I could no longer make sense of the reading let alone be able to write analytical responses to the assignments. I was never able to write that thesis even after they extended my time. Ironically, after being on SSDI for several years, I was able to get the $75,000 in student loans discharged. In an effort to feel good about the whole thing I remind myself that I ended up with a great education for free. If only I could remember it.

  • flynace67
    1 year ago

    MargaritaMaria,

    Before I comment on your post, let me just say that I love your Login name!

    As for the post, I deeply feel your pain. After going to school on and off for years while working full time, I finally finished my degree. Then, just weeks before finishing my final class, came the biggest relapse I’d had since I was officially diagnosed nearly 20 years earlier. Now, a little over 2 years later, I still have many symptoms hanging on, I lost my good paying job and am in the process for disability. The cognitive issues are one of the main reasons. My memory/recall is crappy.

    I just wanted to convey my empathy for your situation, right down to having that awesome education that I worked for but will never get to use. Things sure can change in the blink of an eye, huh? All that aside, though, I hope you manage to stay positive and keep a good attitude. Sounds like you are trying to do that. Thank you for sharing your story.

  • FatherAl
    1 year ago

    Thank you, Devin. No one seems to understand this brain fog. The comments I have read after your description are enlightening. It is so difficult to follow conversations that I start and stop a lot before completing all the comments I want to read and remember. It is increasingly difficult to remain cheerful and optimistic with all the many symptoms taking over your person: physical, emotional, and psychological. Some days I really believe that I am not at all who I used to be and aliens have taken over. Keep up the communication. It is a great help.

  • Joice
    1 year ago

    Thank you for sharing. It is so me. I am now thinking about giving up my house. Life has become very scary for me because of my cognitive issues becoming worse. Sometimes when I keep repeating what I have to do it, it dissipates into thin air. This to me is the worse part of MS

  • Carol
    1 year ago

    Joice,

    What would you do if you gave up the house? Where would you live? And you probably should not be living alone

  • Deborahpoetry
    1 year ago

    Thank you for sharing this. For me, the cognitive part is the part that hurts the worst. I have some physical issues, but the cognitive are the worst. Also, nothing annoys me more than when people undervalue what I’m experiencing by saying me too when they really have no freaking idea what I’m saying. I am not alone. Thank you.

  • StacyNB
    1 year ago

    My experience of brain fog is very accurate to my MS. It feels to me like i have a cold wet towel wrapped around my brain. One time. me and a friend went to the store. I had to use the bathroom. When I got in there I totally forgot where I was. I even forgot if I came with anybody. Thank gawd my friend waited for me! I had no idea we came together.

  • Nancy W
    1 year ago

    Thanks for this, Devin. Yesterday, as I was driving to an appointment, I almost ran a red light. This really scared me. Also, I notice when I play Mahjjong with my friends, which I do weekly, I have trouble concentrating on more than one suite at a time.

    But, my problems aren’t as bad as yours. Seems my cognitive issues are worse when I am fatigued and they do contribute to my disability since 2007. I remember trying to work and not being able to do everything. I described it as ‘slogging through water’ Like my brain was not working fast enough cuz something was holding me back. If I could just get out of that damn water!!

    The ironic thing is that I was prepared for physical disability. My father had polio as a child, walked on crutches til he was confined to a chair in his 70s. My Dad was sharp til the day he died. But, physically, I look fine. It’s the fatigue and cog fog that get me.

  • Mayen2002
    1 year ago

    I know exactly what you mean, It happened to me to. I used to work as an electrical engineer but today I cannot.

  • Carol
    1 year ago

    I used to be able to keep working until I couldn’t. With so much brain fog, I was not able to concentrate and do my job as perfectly as I had been doing for over 30 years. I regret and miss going to work. So I know exactly what people talk about brain fog which I still suffer from, unfortunately.

  • filmcriticwife
    1 year ago

    I am so glad and grateful that I read this. I am a full-time caregiver for my sister who has RRMS. I’m sort of hyper active and I am constantly interrupting her when she is trying to talk. I have a fast paced mind and manner and because of MS she does not anymore. You have made me very aware of trying not to interrupt her when she is speaking, no matter of she is rambling on. That has caused a lot of problems between us, and I really want us to be a happy team. Thank you for writing this insight for article.

  • Nancy W
    1 year ago

    I want to show this article and your reply to my husband. He watches me closely and interrupts if I make a mistake. He thinks he is helping, but it is frustrating. I say, if it is not dangerous, just let me figure it out for myself. Of course, when i left the stove on, or stepped on the gas instead of the brake when i was driving, I was glad he was there to help. It is such a fine balancing act.

  • Spratt
    1 year ago

    Oh my goodness, I did that once before my diagnosis and wondered what in the world did I just do?! I had no idea I was hitting the gas instead of the break – until my car hit that little tree!

  • Carol
    1 year ago

    I used to be able to keep working until I couldn’t. With so much brain fog, I was not able to concentrate and do my job as perfectly as I had been doing for over 30 years. I regret and miss going to work. So I know exactly what people talk about brain fog which I still suffer from, unfortunately.

  • collena
    1 year ago

    I mistook the gas pedal for the brake recently too. Hard when you can’t really feel the bottom of your foot. No injuries fortunately except to the side of my car and the side of the car I backed into.

  • karieland75
    1 year ago

    I totally get it and am so glad you wrote about it! It’s the symptom scaring me the most. I asked my doctor and his answer was quite discouraging he says well you have allot of lesions it’s bound to happen…. Idk feel so young to feel like I’m so forgetful and it’s a daily fight to think remember and not be confused about thinking and remembering!!! And everyone tells me they have it too crazy frustrating. Thank you for sharing this!

  • Usarian Skiff
    1 year ago

    I kissy a job and almost my family striking with this. I have been getting testing for this very issue at ut southwestern until i suddenly collapsed recently. The er neurologist realized that i have been having partial seizures the whole time! The ms neurologist still disagrees and relayed me to an epilepsy specialist.

    I highly recommend getting a referral to a seizure specialist

  • Carol
    1 year ago

    Usarian Skiff,

    Partial seizures and the like sounds seriouis. I hope that you will be able to get the proper diagnosis and also the proper help for it.

  • collena
    1 year ago

    Thank you for finding the right words. I understand; I once loved juggling a dozen things at once- now when I walk out of the kitchen and sit down I completely forget that I’m cooking until I smell it burning. Scares my kids a little, scares me a lot.

  • EmilyAnuhea
    1 year ago

    Thank you for bringing attention to this. My grandfather had MS and had almost no cognitive issues. I’m new to MS and unfortunately for me, cognition problems are one of my most prominent symptoms. Being able to “assign” symptoms to MS helps me cope better with them, so having others that are experiencing the same thing allows me to do that confidently. Thank you.

  • wolfmom21fl
    1 year ago

    OMG! TY so much for writing! THIS is exactly the issue that finally made it possible to get a diagnosis. Cognitive issues like getting lost going to the grocery store a half mile from my house where i had been going for the last 7 years, or forgetting how to braid my hair which i have done every day for the last 20 years. NOT simple things that people do forget every day like where they put their keys… having my symptoms compared to things like that is, quite frankly, insulting. I actually did get teary eyed tho reading this today because as i was getting dressed yesterday to see my PCP, i put my shoes on and realized i had forgotten how to tie them. i sat there on the edge of my bed for 20 mins looking at my feet and trying very hard to bring that up in my mind. i finally had to go out and ask my daughter in law to help me. its things like this that totally and completely freak me out. Yes, MS has taken some pretty large things from me including the ability to work and run around the yard with my grandchildren, but the little things like tying my own shoes or braiding my own hair i think impact me the most emotionally. i hope that makes sense.

  • braindeadmom
    1 year ago

    You are definitely not alone……It’s such a bizarre feeling to just b in the middle of totally mundane, no brainer tasks and then just have no idea how to do something u have done forever! And not having any clue WHEN it will happen again is so frustrating.

    I have gotten used to the “fog” that comes with heat or fatigue. In those situations, I know I just need to call it “a day”. It’s predictable; I can work with that. The other, feeling fine, productive, on top of things one moment, and then just drawing a blank or discovering later u missed something really impt…..I don’t think I will ever get used to that.

    I

  • KateKelly
    1 year ago

    This post is an accurate description of my life and my experiences with MS and cognitive troubles. I have been out of work for ten years now. I worked in a busy law office and could handle all the multi tasking required…until I couldn’t. Occasionally, over the past couple of years I had days when I felt I could run a marathon again ( I was also a runner) and I also thought I could manage to go back to work. This past August I had the opportunity to return to my old law office. I was feeling optimistic and looked forward to the challenges. I WAS SO MISGUIDED. I lasted three weeks. I have been paying for it ever since. I couldn’t retrieve files, I couldn’t remember how to write a will, how to produce a deed or mortgage, even the simplest task put me in a panic. I tried to use the photocopier and fax machine and broke down in a crying jag and had to run to the washroom to compose myself. The support staff helped me a great deal, but I was so humiliated. I find I cannot even read and comprehend or remember what I am reading. To keep what little is left of my brain somewhat competent I decided to take an English literature course at University this semester. I am only auditing the course, so I don’t need to be concerned about producing, but I am really in over my head and am struggling to keep up with the readings. I am so discouraged. What troubles me the most is that friends and family AND the medical community dismiss my concerns and fears as just a normal part of aging. I am only 58,but I feel like my brain is mush. My second grade teacher is 98 years old and going strong. She has much more cognitive ability at 98 than I have had for years. She reads six or eight books a week and I can’t finish a chapter in that time period. At this rate I will be spoon fed at 65.

  • Shelby Comito moderator
    1 year ago

    I’m so sorry to hear what you’re going through @KateKelly. I commend you for sharing a bit of your story here, as many people in the community have shared similar experiences and find some consolation in connecting with others who can relate. Please know that you’re not alone. I am so glad you reached out here and you are welcome to do so any time. We’re here for you! Warmest wishes, Shelby (MultipleSclerosis.net Team Member)

  • Carol
    1 year ago

    wolfmom218,

    I am so sorry to hear that your friends and family aren’t behind you. This journey is very hard and we need someone close to us to be able to care, see, and try to understand what we are going through. I know there is always that tendency to compare ourselves with others, but we will never why some people are able to do some incredible things at their late ages or even those at very young ages. One of the wonders of life. I am so sorry that our lives are not turning out the way we were hoping they would, but we are still alive and we can help each other.

  • LuvMyDog
    1 year ago

    I guess I’ve been lucky…to a point. I was diagnosed with MS 37 years ago. The memory problems cropped up maybe 3 years ago and now, are pretty bad. I have a very hard time remembering names. I could have seen that name written down 5 minutes ago and already couldn’t remember it.
    Conversations are difficult because I can’t quite get the right words out. I know them….but they seem stuck in my throat, not quite making it to the tongue.
    What that does is, make me look stupid to people who do not know me and I am far from stupid.
    I’ve become someone who hates going out in public anymore. I have to focus and choose my words carefully when I do talk to people.
    Yes I know…I’m not alone with this problem but……………that doesn’t make it any better!
    And we can’t expect people who do not have MS to understand these problems.
    It’s a little frustrating but I try to take a minute or two to explain.
    But again…if you’ve never had a broken back or have been bitten by a rabid raccoon, you can’t possibly understand what it’s like.
    Same goes for this ugly disease.

  • opirnia
    1 year ago

    sadly understood. Like you I had vision trouble now and then, sometimes couldn’t walk. I was a college professor, an occupation where being disabled in a wheelchair wouldn’t matter though so I planned for that and thought it’d be ok.

    …but it wasn’t. turns out not being able to learn new research, write (or even read with understanding) journal articles, respond to student questions, or grade papers etc etc etc made that impossible. life goes on.

    just resetting password and writing this comment has taken, not sure. too long. glad it’s not just me but sorry others also have this happen.

  • opirnia
    1 year ago

    actually learning new stuff briefly is ok. doesn’t stay with me though. distraction thing also spot on. even a background noise will cause distraction and then I don’t know what I was doing. at least for a while. sometimes I’ll remember. sometimes not.

    forgot there is no editing. end of comment. maybe makes sense.

    oh, for worried newly diagnosed people realize this was ok for about 20 years. came on slowly but then has stayed. for me. may be different for you.

  • PiMaybe
    1 year ago

    Dear Devin, thank you so much for sharing your story with cognitive issues. I’m a “newbie” in the MS world, and my biggest fear is cognition/memory loss. I’m a physician working on clinical research, needless to say I need to “hit all cylinders” as you well said, to produce at work. I think so far so good with my cognition, but I know this is a long road. Thank you again, and congratulations on your writing, it is beautiful.

  • cheyennejourney
    1 year ago

    Thank you so much for sharing this, the words felt like I could have been reading my own journal. It’s good to know we’re not alone.

  • sharenelewis
    1 year ago

    I’m really scared to death over this.

  • pmm
    1 year ago

    I know you’ve written on this topic before, but everytime I read one of your posts, I am shaking my head vigorously in the affirmative with everything you say. “Of the many symptoms I’ve experienced because of MS, my cognitive problems are the ones that trouble me the most.” <– this, absolutely, yes. I am a research scientist (astronomer), and creativity + critical thinking are absolutely essential to my livelihood. I am struggling mightily, though, because of the cognitive disability that has slowly progressed over a period of ~20 years. The issue has become such a challenge that my neurologist ordered a NeuroQuant analysis with my 2017 and 2018 MRIs. NeuroQuant does an automated measurement of the volumes of various components of the brain and compares against an extensive database of healthy brains of similar age/gender. Last year's results left both me and my neurologist floored: my hippocampal volume was in the 8th percentile and ventricular volume in the 89th percent. Together, these values suggest brain atrophy. (The "empty-caverns" of the ventricles increase in size as mass is lost in other parts of the brain like the hippocampus). She was so concerned, in fact, that she suspected early-onset Alzheimer's and sent me for a neuropsych evaluation at the Aging and Memory Center in a nearby well-respected university hospital. That evaluation was essential to understanding the nature of my cognitive deficiency: the doc was able to rule out early-onset Alzheimer's because my ability to make new memories seemed to be OK. My cognitive deficiency was primarily in **retrieving** memories, a feature more characteristic with MS. Alarmingly, the NeuroQuant analysis on my 2018 MRI shows my hippocampal volume in the 5th percentile (down from 8th in last year's results) and ventricular volume at 90th percentile (increased over last year's 89th). Clearly my brain is showing signs of ongoing atrophy which, of course, is likely the physical reason for the cognitive issues. I would be really interested to know if all MS patients who suffer cognitive issues to the degree that you, I and others who have commented on here do all show significant brain atrophy similar to mine. (From what I've read, hippocampal volume loss is almost always a marker of Alzheimer's. I don't know how much research has been done to study hippocampal atrophy in MS patients, but knowing what this atrophy typically suggests left me in a fit of anxiety until hearing the results of the neurocognitive evaluation. Although I am still concerned about my brain atrophy and ongoing cognitive struggles, I am fairly certain that Alzheimer's dementia carries a significantly worse prognosis than MS cognitive dysfunction, but again, would be great to read more research on this topic.)

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for sharing pmm! Like you, from what I understand, this is better than the beginning of Alzheimers, that still doesn’t make it easy or serious though. I’m so sorry to hear what you’ve been going through. It sounds like you have a capable medical team though, unfortunately, that is not the case with many of us. This is a topic that very much needs more effort dedicated to it by researchers.

  • @masbrautigam
    1 year ago

    I have some of these issues but not yet extreme. I do find the longer I have MS the more fog. Forgetting things is a big part and short term memory. Confusion is among them but thankfully not often.
    Thanks for a great article again.

  • Devin Garlit moderator author
    1 year ago

    Thank you mascha!

  • caya1430
    1 year ago

    Devin, I do not know how to begin with this posting. What I can say is how thankful I am for this article. My cognitive impairment has been exactly what you’ve described and yes, I am scared. I am scared! I’ve been declining recently and can’t find a way out of it. I don’t know how to make it better. My brain is mush most of the time. I forget things a second later. It feels like when I’m in a complete fog, I need an alarm to sound off to make me come around to reality. It is difficult to explain to anyone, but I now have this article to show my neurologist and family. “It’s more than a fog” and “it’s terrifying “ is what I’ve been saying for awhile. Thank you for listening.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much caya1430, you are not alone!

  • StephMS35
    1 year ago

    …lol…cognitive impairment + ms dementia. I found a really good informational article here- https://www.dementia.org/multiple-sclerosis-and-dementia
    Why was I looking at this? Because it sounds like we have many similar symptoms. Plus I saw my neurologist this past week and was recommended to a neuropsychiatrist for testing for dementia. Scary word. Probably why I have not called to make the appointment yet.
    My symptoms have changed in n that th hey went from weekly to 3or 4 times per week to multiple times per day! I forget everything i just had as I leave a room. I do not follow through with tasks and end up going back to finish what I was doing once I walk by the area hours later. It is like my brain resets on it’s own!- and I do not realize it.
    I hope that the testing will get me some help with organization of my day to day life to make things easier. I do not drive or work so maybe it will be what I need to gain some relief with being able to file for disability.
    The coffee + cpap are working today so thanks for listening to my rant.

  • StephMS35
    1 year ago

    Hi Devin. I have not read your posts in a while because I have been trying to stay away from MS talk due to exhaustion on Lemtrada treatment, year 2 recently. But last night that changed and I spent time researching cognitive decline as it relates to

  • Poll