I have lots of painful and frustrating symptoms, even though I am undx. The one that most effects me is my problems with cognitive function. I have always been very creative, bright, had a quick and good brain.
Now some days, I can barely think, can't type the correct words in the correct letter order, can't spell, can't talk to my family, have no short term memory-I have gotten to where I write everything down the min it comes to mind or it will be gone to the nether world, but here in the last couple of months, some days a thought will be gone before I can even have time to write it down.
I know that many of us have cog fog and cog assoicated problems. I was doing a little surfing this morning and found this article, I will post a little of it here and include the web site if any of you are interested in ready the entire article.
Cognitive dysfunction as a symptom of multiple sclerosis (MS) may be the one that makes me the saddest. I can get angry at the “MS hug” and frustrated with trembling hands, but being mad at how my own brain and though patterns are misfiring is a little too complicated. It is also the symptom that is the hardest to talk about with people without MS, as it often comes across as a lame-sounding apology for being “ditzy” or is met with people mentioning how forgetful they have also become since they had children or turned 70.
Sure, we all misspell words sometimes or leave something off a list. However, many of us with MS have a moment that we can point to as evidence that the cognitive neurons are not as robust as they used to be. My “big moment” came when I intended to dash into a store to pick up some last-minute holiday wrapping supplies. I got into the middle of a big display area of giant shelves of shiny, colorful paper and ribbons – there was loud Christmas music blaring, twinkly lights blinking everywhere, and people grabbing at sale items while screaming at their out-of-school children. All of this “input” combined to not only completely make me forget what I came for, but to completely immobilize me. I don’t know how long I stood there staring uncomprehendingly at the whole scene before something jarred me back to reality and I fled from the store, empty-handed.
What Does It Feel Like?
While cognitive dysfunction feels different for everyone and can change daily, many people with MS can identify with part or all of the following descriptions of MS-related cognitive problems:
Problems with Abstract Conceptualization: Put simply, this is difficulty with figuring things out in the “abstract” in a way that is going to lead to a desired outcome. It means that people get easily overwhelmed if something is too complex, as it is hard to organize thoughts and tasks, to apply lessons learned from multiple past experiences, and to be “flexible” enough in their thinking to come up with alternate solutions if a problem arises. This can negatively impact judgment.
Short-Term Memory Deficits: The most common form of cognitive dysfunction in MS, this usually manifests in things like forgetting whose number you just dialed, going to the pantry and not knowing what you went there for (even though you just looked at your recipe), or being unable to remember if you took your pills or not. You may also find yourself repeating a sentence or part of a story to someone that you just told it to, not aware that you had already said it.
Attention Difficulties: This can manifest as “distractability” or simply inability to keep your mind on a task. You may find that you are unable to multitask or that even minor ambient noise, like the television or music, can make it virtually impossible to concentrate on things like reading or performing sequential tasks, like those involved in cooking.
Slower Speed of Information Processing: This includes all the aforementioned symptoms, and it means that the brain simply cannot take in and prioritize all of the information coming at a person at once. This includes problems processing language (spoken or written), sensory information (visual, sounds, smells, touch), spatial information (like that involved in navigating while driving), or more abstract things like social cues and reading people’s emotions.
http://ms. about. com/u/ua/ signssymptoms /user_cognitive_moments.htm? from=lb (take out spaces)
I will post some personal experiences with cog fog on another thread. I tried here but the post was too long.
I have a pantry in the garage here at my best friend's house (she's not much of a cook). I don't know how many times I've gone out into the garage, opened the pantry doors, and stared at the spices and flours, honey, other baking stuff, trying to figure out what I needed!
The worst is when I go upstairs to get something and forget what it was. My knees and lower back don't like stairs, so I can spend some time upstairs, trying to jog my memory.
I hate when I forget if I've taken a pain pill or not; I don't want to take more than four in a day, but I don't want to miss one, either.
My hearing is very good, but when there is a lot of sensory input; noise, lights, smells, etc, I can't hear what someone sitting next to me is saying. Sometimes watching their lips move helps, but not if, say, we're at Red Robin (that restaurant is the noisiest one around here!).
I've been a season ticket holder for the Portland Pilots Women's soccer for three years, and I still don't understand soccer. Watching it, with all the noise and running and lights and people around me talking and the kettle corn being made across the field, I haven't been able to process what the different positions are, when they call "offsides" (though I understand the rules, i can't SEE it when it happens). I
keep promising myself that I'm going to sit down and learn all about soccer, so that maybe I'll be able to understand the calls, but I just keep going and enjoying the games. It helps that I sit next to a former soccer referee, who explains a lot. I forget from game to game, so I try not to ask too many questions, but he's very patient. A couple of women that sit on the other side both played soccer, so I learn from them, too.
doni, you're probably posting your coginitive difficulties while I'm typing this, and what with correcting my typing mistakes and taking a phone call, you'll probably be done first.
This is a tough subject to deal with; like the person said, it can sound like you're making a lame apology for being "ditzy". My best friend stops me if I say something about my brain not working right; she's afraid it will be a self-fulfilling prophecy; if I say it out loud, believe that my brain isn't working right, then it won't be.
Here's what my neuro-psych exam said (yes, I keep it in my purse.)
"In sum, the predominate features of her neuropsychological profile are moderately impaired selective and divided attention, cognitive flexibility, storage of visual information, visual discriminiation, visual attention to details, verbal fluency, and concept formation, and mild impairment in processing speed and memory processes for auditory information. There is evidence for mild decline in intellect into the average range from a pre-morbidly high average level. Psychological factors are present, but are not of sufficient severity to account for her current deficits."
What does that mean? I get distracted easily, I can't remember stuff, and I have a hard time visualizing a concept.
I was going through a small flare at the time (didn't know it until I got better!) so I guess this exam could be considered as me at my worst.
Aricept has helped mainly with my attention and memory. I'm curious to know if I still would have those problems if I stopped taking Aricept... maybe I should ask the neuro! Although he didn't want to prescribe it for me in the first place, so he's not one to judge.
You know I just thought I was losing it at first. I've always had a near-photographic memory and when I started having symptoms back in February, I just felt like I lost my edge. I didn't know that the cognitive issues that I was dealing with were the cause. I still deal with it, just like everyone else I'm sure, but it's frustrating to be in the middle of a sentence and just stop, stammer and forget what I was talking about. Not remembering to take meds in the morning got so bad that I had to start setting up reminders on my PDA to take my meds. I forgot my allopurinol for almost 2 weeks and could have wound up in a much more painful situation if my wife hadn't caught on. I think the thing she hates the most about it is that I'll tell her something, and then (she says) I'll tell her again in an hour or two. At first, she didn't realize what was going on and just thought I was being a dink, but then we were talking to my neurologist and he shed some light on it for us. A real eye opener, that appointment was.
I truly don't remember writing that article.....just kidding. It did help me understand some of the things listed on my neuropsych eval. I had been trying to look the stuff up to make sure I understood but it was overload. The more I read the less I knew!
Thanks for posting this. While I'm not sure what I have, and thankfully don't think it is MS, brain fog has been a steadily worsening issue for me.
I also have found that my doctors don't seem to *listen* to this particular concern. While I have repeated my cognitive symptoms to my PCP and specialists as my primary concern, it never appears in their notes (which I've grown to diligently request, scan, and keep in a binder like a good Limbo-lander).
I'm not sure why I have so much trouble effectively communicating these concerns to my docotrs. I have begun for this very reason to put it in writing and hand it in to be inlcuded in my file.
I'd be interested to know if others have also experienced that their cognitive symptoms don't capture adequate attention from their doctors? It makes me feel as though they assume that I am exaggerating, or that I don't really need my mind. Eitherway, it upsets me a great deal.
Reading this was like reading about me. Shoot now I forgot what I was going to write. :)
Oh yeah after reading the article again I remember. I use to be very good with my memory, When I was designing computers I could remember what every bit of an instruction meant. The last computer I designed had 192 bits and by just looking at the ones and zeros I could tell you exactly what the instruction was to do. Now I have trouble writing my own name because I will forget how to make the letters.
Also several years ago I met a woman that had been in a really bad accident. She was in a coma for 6 weeks and they had to remove part of her brain to save her life. It was really interesting talking with her because she would have trouble coming up with the right name for things, forget things in mid sentence, etc. Basically just like a lot of us with cognative problems. But what was so interesting is that we could talk all we wanted and completely understand what each was saying. It was like she would mess up in saying something, but my brain would also mess up to make what she was saying correct. The same thing would happen when I talked so it was like we were both normal. The only reason we knew this was happening was because are friends would be constantly asking us what we were saying. They could not understand either of us.
I had to fight to get a neuro-psych consult. My neurologist thought that I was just 'confused' which is a bit disconcerting. I got smart, and figured I'd never get anywhere by telling him I was having problems, so I asked for a exam to get a baseline for future impairment. He referred me to the psychologist, but wrote on the referral 'see no signs of cognitive impairment.' Like he's an expert! Sheesh.
So I get the exam, and it basically says that I'm moderately impaired in a few select areas - a sign of organic damage to the brain. The psychologist recommend Aricept, and so I asked the neurologist for a prescription. You would have thought I asked for heroin! He freaked right the **** out. Got mad at me. Said that Aricept didn't help with mild cognitive impairment. I guess his reading comprehension isn't all that hot. I have moderate impairment in a few areas, which when you average it out, comes out to mild overall impairment.
I stuck to my guns. All I wanted, I said, was a chance to see if it helped. So he gave me a month's sample of Aricept, and it really did help.
I'm not going to say it's the answer for everyone. I'm getting tired of the extremely vivid, yet boring dreams. I'm also not sleeping as well as I should, but I'm not sure if it's the Aricept, or just me. When I'm in remission I don't sleep very well. But i can remember strings of numbers now! I can participate in conversations, remember dates, drive without feeling like I'm a hazard to other drivers on the road... All these make me feel like a person again.
I'm not disabled, I still have a full-time job, and I have to be able to function. But it seems like the neurologists (or at least mine!) aren't interested in me being able to work. I guess as soon as you're diagnosed, you're off to disability land, and ta-ta! Rather depressing.
It's terrible, because the sicker you are, the more you have to fight for good treatment. And it's not easy to stay on top of things when you've got cognitive problems! So always be your own patient advocate.
Wow, yes, that article was right one. I saw myself all the way through. Amazing. My mom will ask, did you do this? And of course, I say... um, was I supposed to? Becuase I forgot she asked! :) Names are awful, and I can't count anymore... and please, don't ask me to find my way around town where i've lived most of my life- I will be ok one second and lost the next in a familiar part of town. I don't remember things from minute to minute- my short term memory is so bad I just call it hilarious (that's better than crying over it!). And like all of you, I could go on..
This article makes me feel better in some ways, it reminds me I'm not alone.
Thanks for posting it!
Happened to find this article while looking through my MS links - not bad! Some good suggestions. As the author says, most cognitive tips are about using your PDA or sticky notes to remind yourself of important stuff, and doing crosswords every day. Not real helpful in resolving cognitive issues!
Tame your environment:
Reduce noise in your house, as it can be distracting. Adjust the lighting so that it's bright and focused where you need it, soft and appealing when you're relaxing. Overhead lights can be very stressful - as I know! Eliminate clutter so your eyes won't be distracted from your tasks.
Tame your people:
One person talks at a time - this is hard when you have a family like mine, but worth it. Everybody should be in the conversation, without distractions. And always check back with somebody to make sure you heard what they said.
Tame your brain:
Don't multitask. Organize your home. And talk to your brain to remind it of what you're doing - saying things out loud, or creating mnemonics.
Here's the article in full (take out spaces in address):
http: // ms.about.com/od/livingwellwithms/a/cognitive_tips.htm
Its amazing to me that for a problem that is so widely recognized by us, the patients, the medical world for the most part doesn't want to see it or deal with it.... I voiced my concerns about cognitive function in february after my heart attack and was told it was just because my brain was on overdrive and when I could begin to relax, everything would get better. By March I was stil a mess and at an appt. with a doctor I could not retrieve in a timely way the name of the hospital I went to for my HA, the name of my caridologist or the name of my GP. Each time I was asked aquestion it took me easily 30 seconds to fill in the blank.
I would love the "just relax" diagnosis to be work but I instinctively didn't think it felt right as a dx then and it still doesn't 10 months later. Words have always been important in my life - spoken and written words. Now I have gaps in my conversations, can't focus to read a book, and the spellling is becoming a challenge to get it correct.
Now I can add the latest - the day before thanksgiving I was running errands on a familiar route and missed where I was going 3 different times... at least once I didn't recognize that I had to turn at a particular intersection because the intersection looked totally foreign. The other two times I can't even tell you what made me do what I did or didn't do......... It was a very sad feeling when I recognized the problem was me!
I also can't pay attention to a conversation for very long - tending to space out. I can get by with that with my husband of 35 years but my coworkers are a different thing.
Thanks for starting this thread and giving me a chance to say all this rambling stuff- the people who love me all want to say I'm just imagining these problems...........
My son just completed his English 102 term paper. He did it on MS and Cognition. I was really proud of him. He could have done it on anything but I think he wanted to understand what was going on with Mom. His research said according to the MSSA only 5 - 10% of ppl with MS have cognition problems severe enough to interfere with their everyday function/activities. In that case I guess all of them belong to this forum. It seems exceptionally wrong that the MSSA would report the percentage that low. Maybe it is because enough ppl don't report it...maybe for fear of the stigma attached to cognition difficulties?
Jen, thanks for the site. I have gotten to where I can't sit around with my family like I used to. Our family sounds like yours, everyone talks at the same time and it can get a little loud. After about 2 mins of it, I will start to shake all over and get those internal tremors. I have to just excuse myself and go off by myself to get back in control. It is really frustrating cause I really miss doing this.
My hubby got a little aggravated at me on Thanksgiving for not wanting to go to his family's get together. Other than being exhausted from all the cooking, I knew I couldn't deal with the crowd. I've tried to explain this to my family, but no one seems to want to understand.
Lulu, that's what's so great about this forum, none of us are alone in what we are going through. Bless your heart, literally. Having a heart attack and then finding out you have MS, on top of all of it. Sheesh, I think you are doing amazingly well. I would probably be in a cute little tie around the back jacket in a padded cell......heeheehee We love you Laura, you are never alone.
Save, what BS!! Yes, you would think that the MSSA would do a little better research before putting out these numbers. But then again, from what I gather, most of the neuros fluff this problem off, so if it isn't in our records then no one but us knows what is happening to us. Maybe everyone who is dx should write a letter to let the MSSA know that it is a problem that should be better studied.
Well, the statistic is misleading... I think over 70% of MS patients have some sort of cognitive problems, and 40% of those people have moderate cognitive impairment.
My moderate cognitive impairment wouldn't have kept me from working at my current job. However, I was certainly having problems! My work declined in quality, and I was making more mistakes. I suppose I could have a less demanding job, like working fast food, but that has its own set of problems, and the employer's less forgiving if you can't stand up for eight hours.
Saveone, what is MSSA? Is it the Multiple Sclerosis Society of South Africa? I usually hear about the National Multiple Sclerosis Society (NMSA.)
MSSA is me on brain fog....I was going to scroll back up to fix it but I couldn't find my wallet...that is so like me...I picked up a candle stick to answer the phone...ROFL
The Multiple Sclerosis Association of America states, cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition...Only 5-10% of persons with MS develop problems severe enough to interfere significantly with everyday activities.
Great article! This is a frustrating and scary issue because it seems like our brains shouldn't betray us like this and we should somehow be able to keep control and stop this. At least it makes me feel out of control that I do so many stupid things.
The strongest cog fog I ever had was just before and during when I had the bad case of strep throat after which I got my first symptoms where I really knew something was wrong. The weekend before I got sick I felt really tired and fuzzy-headed. My husband was repairing something and also making pizza dough. He decided he needed to go out and get some part so he told me to put the tomato sauce and cheese on the pizza and put it in the oven while he was out. Somehow, I only put the cheese on and totally forgot the sauce. Never noticed and we ended up with cheese bread instead of pizza.
The whole time I was sick I felt like I had some kind of brain fever and I was really slow and unable to think straight. When I called my PCP to try to get an appointment, the receptionist tried to discourage me (my PCP at that time was always way overbooked), but I couldn't think of an alternative and doggedly insisted on an appointment. Of course, I had to wait forever, feeling miserable, and I should've just gone to the doc-in-the-box. But, it was like the wheels in my brain just wouldn't spin.
I do still feel off, though, and I hate it when it sneaks up on me. Like earlier today when I unlocked the door and came in from the outside and got distracted and left the keys in the door. I did that once overnight even.
I really do love all of you.............it's not great to have our brains doing these crazy things, but to know my friends have similar "off the wall moments", makes it easier for me to cope with mine.
Great discussion. With regard to how many have "significant" cognitive problems, I think it depends on how you define "significant." Many studies I have read seem to use the rule if the cognitive difficulties are sufficient to cause you to quit working, quit driving, or need an assistant. They don't seem to acknowledge the havoc that the constant, "little" things have on our lives and our self-image.
Besides the verbal language and the problems I now have with spelling (I was always a great speeler) I find that I can figure out how to accomplish things like the problem:
I have both arms full and the handles of sacks and my purse on both arms. I can't figure out how to switch the arm loads to reach into my purse for my keys and then to get the keys handled right to unlock the door. I keep switching things back and forth and can't solve the problem.
"Short-Term Memory Deficits: The most common form of cognitive dysfunction in MS, this usually manifests in things like forgetting whose number you just dialed, going to the pantry and not knowing what you went there for (even though you just looked at your recipe), or being unable to remember if you took your pills or not. You may also find yourself repeating a sentence or part of a story to someone that you just told it to, not aware that you had already said it.
Attention Difficulties: This can manifest as “distractability” or simply inability to keep your mind on a task. You may find that you are unable to multitask or that even minor ambient noise, like the television or music, can make it virtually impossible to concentrate on things like reading or performing sequential tasks, like those involved in cooking."
Absolutely my biggest problems. Tonight, I was picking up a prescription. I swiped my card. Then, what must have been 10 seconds later, I didn't remember that I'd swiped my card, and I said to the cashier--"Do I need to swipe my card now?" and he looked at me like I was nuts before saying, "You just did that."
And EVERY NIGHT and EVERY MORNING, I have to take birth control pills and then thyroid meds (respectively); thank God the BCP packet has the days of the week on it because otherwise, every single night, after I've taken it, I'd try to take it again. In fact, a few times, I've accidentally taken two anyway because I don't remember taking the first one. The weird thing is, I don't FORGET to take it, I just REMEMBER to do it twice. And that, to me, is the difference between an OK long-term memory and a failing short-term memory.
I'm already making many adjustments to my life because of these things. I tell my husband or write things down right away when I think of them because I know I'll forget them. I never used to be like this; always kept the "list" in my head. And my students? They think I'm nuts because I'll have to stop sometimes and ask them to repeat a question because I can't remember it, etc., I can remember absolutely fine all of what I'm teaching, but anything short term just flies right out of there.
Bio I loved what you said, I don't FORGET to take it, I just REMEMBER to do it twice. That is so defining. it is something I always wanted to explain and didn't know how. It is like when I took the neuro/psych eval. The tester showed me 50 pictures, one at a time. Then she showed me 50 sets of pictures. I had to tell which pic I saw. I got 46 out of 50 on the first try. However, I could not remember which pic I saw...I remembered which pic I had not seen. I didn't forget which one I saw, I just remembered which one I didn't.
Thanks for the post. I am not diagnosed.Four Drs. think I may have MS but are still diagnosing me, MRIs every six months. For two years now my ability to find the right word when speaking is very difficult. Not a day goes by when people don't laugh at me because I say the wrong thing. I am bipolar and my brain used to race now it is painfully slow. From the time I could first speak I had an excellent vocabulary. People tell me its age but I am only forty-five. I can type I just can't talk. My short term memory is worse than ever. I feel like my father must have felt when his cancer had spread to his brain. The Drs tell me not to worry about it.
I'm so fortunate not to have the cog fog that is so prevalent in this community. At least I THINK I don't. But how do you distinguish between ordinary momentary forgetfulness, which often happens when we try to do too much at once, the aging process with its own set of problems, and cognitive difficulties arising out of MS?
The fact that I'm kinda old (to put it mildly) complicates my situation considerably. When we reach a certain point we begin to second guess ourselves every time we do something ditzy. We're always wondering if this is the beginning of the end. But the fact is that all my life I've been a bit absent-minded. The other morning I had my dog's dish on the counter, and almost poured orange juice into that rather than the glass next to it. My mind was on auto-pilot and a million miles away. But really, this kind of thing is nothing new for me, so I don't feel I'm losing it lately.
It's not unusual for me to open a closet and forget why immediately, but nearly always I've had several flickering intervening thoughts and I'm just not paying attention. I guess I've been more or less ditzy all my life in this way. So I really don't know whether either age or MS is catching up with me. My general mental capacity doesn't seem diminished. I have an occasional problem with word retrieval, but not with speaking or organizing my thoughts. I still multi-task as well or as poorly as ever. So I'm being an optimist and saying that thus far cog fog hasn't been a problem.
If anyone can relate to this, please say so. I could use either reinforcement or a reality check!
I am a college professor, an English teacher. Most of my class involves delivering lectures about the really boring stuff - grammar - as well as the not-so-boring stuff about rhetoric and writing ... in a literature survey class I also teach I noticed my inability to say certain key words or phrases pertaining to whatever the dubject matter at hand might be ... things like "anaphora" and "denoument" are important, but I found myself being unable to remember how to say the word unless prompted by someone else. I began giving my students pre-printed lecture notes at the beginning of the class so that they - if they follow along - can do the prompting. It sorta sounds like I am asking them for the answers to questions I'm posing, but I'm really just asking for help to complete whatever it was I was saying ... slick, yes?
Hi Professor B - those lack of words are not at all uncommon. It seems they come and go - lately I have been struggling with names of people who I have known for some time. I just have trouble conjuring up those names at time. At least I haven't forgotten my own name.
I hope we see you around often.
PS I work in an English department, supporting all of you professor types :_)
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