Cog-Fog

Cog-Fog

Okay, let me just start off by saying… I don’t embarrass easily. I’m a very open person… and I don’t usually care what people think. But let me tell you what happened to me this past weekend…

Well, here in Texas, it is officially Dove Season… so my husband and father-in-law and their friends went out hunting. So we had a BBQ this past weekend to cook what they killed.

We had a bunch of people over here, and some of my family that I don’t normally see on a “regular” basis. I didn’t know a lot of the people that were here “well”… as in, I haven’t hung out with them before… and that isn’t what bothered me, by the way.

It was a long day of hanging out and cooking and eating and having fun… as it got later in the day, my body (and mind) were getting fatigued… go figure, right?

So, we’re all hanging out and talking… and I’m holding a conversation and I’m thinking in my head, what I want to say before I say it… that’s a normal occurrence for me.

As I was saying out loud, what I had “planned” to say in my head… the words just weren’t coming out the way they were supposed to! I planned to say something about Colorado, and ended up saying something about California? And of course I got looks like, “what”… cause I obviously confused them.

I went to correct myself to say Colorado, not California… but I couldn’t get the words out… and my husband (bless him) came to my rescue.

That was just one of the MANY occurrences that evening. Now, like I said… I don’t embarrass easily… but I was getting there, because these people didn’t know why I was having such difficulty speaking… and I couldn’t even get the words out to explain why. I finally ended up going to bed, because I just couldn’t keep up anymore.

But I’m wondering how I should handle situations like that in the future… Should I let people know that I have MS sooner…? I mean it didn’t come up… and by the time my lovely fatigued brain came in to play, I just couldn’t seem to explain.

Even when I have explained the situation in the past, in different scenarios, they nodded their heads, but I don’t think they fully understood what it means to have that type of “cog-fog” as I like to call it.

I know a lot of people have issues forming conversation when they’re tired… but this is different, and it’s hard to explain… Because it happens even when I’m not tired… but it’s A LOT worse when I’m fatigued. When that happens, I say… “huh”… A LOT!

Do you know how many times I’ve put the milk up in the cabinet, instead of the fridge? Way too many to count… It seems as though my brain goes on strike and just isn’t anywhere in the building…

I guess I can deal “okay” with my body being fatigued… or my brain being fatigued… but both at the same time… oh goodness, it’s chaotic!

Even when I’m well rested and doing something or having a phone conversation, I will get silent because I have the word I want to say on the tip of my tongue… and it just won’t get past the brain to mouth filter, or something. At least when I’m talking to one of my friends who has MS, they know what I mean without me saying the word, and they can’t seem to get the word out either at times. So that’s at least comforting.

One of the many phrases I use now a days while holding a conversation is, “Oh, you know what I mean… ”

So there is my latest vent, I know I’m not alone in this… and I just wanted to voice my “issues” with my “cog-fog”.

xoxo

Ashley Ringstaff

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Comments

View Comments (109)
  • MzT
    1 month ago

    I was diagnosed with ms 30 years ago. In The first years I had some gran mal seizures. My doctor put me on an ant-seizure medication. The medication was mostly doing the job but I would still get what I called break-through seizures. My doctor would then up the strength of this medication until I was up to 1000 mg. My husband reported that I was a couch potato. I could not follow a conversation and would embarrass myself by losing the thread of the conversation.
    One day after ten years of taking this medicine, I went to the emergency room and the doctor was appalled by the high dosage of the medicine that I was taking.
    I changed neurologists, he tried another ant-seizure medication and low and behold, I could think clearly again. I could carry a conversation, ad a column of numbers and write a story.
    That time, it wasn’t cog-fog it was medication fog.
    Make sure the cause isn’t a high dose of medicine or something that your body disagrees with.

  • Ashley Ringstaff moderator author
    4 weeks ago

    Thank you for sharing your story. I’m sorry that you had to go through that.

    When I was initially diagnosed, my diagnosing neurologist was just medicating me and not really addressing the issue.

    I now have a new neurologist who I love and really listens to me, and I’m not having medication-fog, as you call it. Which I love that term, and I might have to steal it lol

    xoxo
    Ashley Ringstaff

  • Colleen Fegan
    1 month ago

    OMGosh Ashley, that is me in a nutshell! It came to me badly the other night when someone awakened me from a nap. (she’s psychologically fragile so I bothered to answer). I ‘lost’ every other word, and the only thing I could do was apologize time after time. She knows I have MS, but you really can’t get the whole ‘it’s a physical disease only’ out of EVERYONE’S head.

  • Ashley Ringstaff moderator author
    4 weeks ago

    I’m sorry that you had to deal with the dreaded cog-fog. It’s never fun!

    I really do wish that people could understand that not everything is visible.

    Anyways, thank you for reaching out!
    Best,
    Ashley Ringstaff

  • MsTrivette
    2 months ago

    The other day I was at a fast food restaurant and I had gotten my drink. While still at the drink station I got my straw, opened it up and threw away the paper (so I thought). I got to the table and looked in my hand and I was still holding the paper. I had thrown the straw away and kept the paper. I was so confused for a minute. Talk about cog fog. Of course I had to laugh it off in front of my coworkers, but it really bothered me. Stuff like that is happening more frequently.

  • Ashley Ringstaff moderator author
    4 weeks ago

    Oh man, you aren’t alone in that. I tend to do things backwards all the time. Put up a cup in the fridge, and the milk in the cabinet. WHOOPS!

    If you are experiencing more cog-fog, try to keep a journal or notes on your phone about it and address it with your neurologist. If need be, don’t wait until your next appointment and call them instead.

    xoxo
    Ashley Ringstaff

  • linda1988
    2 months ago

    I have cog fog often.
    I’ve had MS for at least 30 years.
    My doc gave up on me–nothing more to do medically. Just keep doing and fighting.
    That works for me as that is the option to
    \work with.

  • Ashley Ringstaff moderator author
    4 weeks ago

    I’m sorry you have been dealing with this disease for so long! Wishing you all the best. I’ve finally found a medication combo that helps with it.. adderall mainly. Cause I deal with fatigue, it’s one of my main symptoms.

    xoxo
    Ashley Ringstaff

  • Colleen Fegan
    1 month ago

    I take a medication for Alzheimer’s. Frankly IDK if it works or not, AND I find it difficult to come up with a way to remember to take it.

  • ShelbyComito moderator
    1 month ago

    Hi @ms_n44vhi, thank you for your comment! Trying to remember everything can be so hard and frustrating. One of our advocates shared a few tips for how he remembers things in this article: https://multiplesclerosis.net/living-with-ms/remind-me-few-ways-remember/ I hope these might give you some helpful new ideas. Thank you for reaching out! Best, Shelby, MultipleSclerosis.net Team Member

  • B2468
    2 months ago

    I have been dx since 4/94 with RRMS. I have rather significant cognitive fatigue issues from my MS…. 2+2 do not = 4. It took me 2 years to convince my neurologist to let me try Cylert for this. 18.75 mg tablets used for ADHD for many many years. It was like night and day. The fog burned off and life was real time again as opposed to being 2-3 steps behind on everything.

    When it got pulled off the market in ’04, I shifted over to Ritalin. 20 mg 3x per day…6a, 1030a & 3p. The Ritalin lasts about 6-7 hours so by the time the first dose was wearing off, the next dose was working. About 1 1/2 years ago, I tried Adderall 2x per day on advice of my current neurologist. I take this at 630a & 11a. This lasts most of the day without issue.

    I do not know what I would do without this medication. I could not keep track of my life, take part in a 3 way conversation or put together a coherent argument on something. For more info, do a Google search on Ritalin or Adderall and MS cognitive fatigue. You find some postings from different sources as well as many that I have put up asking why this has not been studied further.

  • Ashley Ringstaff moderator author
    4 weeks ago

    Thank you for your input! I’ve tried many medications for fatigue and cog-fog…
    I am now currently on Adderall two times a day, and it works wonders.

    Anyways, thank you again for sharing your experience.

    Best,
    Ashley Ringstaff

  • amy5677
    3 months ago

    I’m wondering if this is what I have been experiencing. I forget what my favorite drink is called or a certain way I do something at work. For a few days I felt like I had never done my job before. It made my depression worse and I felt stupid to say the least. I forget some of the simplest words. I know what they are but can’t think of them.

  • Ashley Ringstaff moderator author
    3 months ago

    I’ve had similar issues in the past… things that I’m SO familiar with and have done so much, I just forget… Or I forget what I’m doing as I’m doing it. I know it’s depressing, but you aren’t alone in the struggle, trust me.

    xoxo
    Ashley Ringstaff

  • Hedy F.
    3 months ago

    Ashley’s article relates so profoundly to my situation as well. So much of what I battle daily with daily is related to projecting my voice, which over time seems to have weakened; words, that often escape me; swallowing and the feeling of a lump in my throat; and, of course Cog-Fog which worsens with fatigue. Thanks Ashley for a great article.

  • Ashley Ringstaff moderator author
    3 months ago

    Glad you enjoyed! Sorry that you have to deal with the issues of cog-fog and the many, many, MANY, symptoms of MS.

    xoxo
    Ashley Ringstaff

  • itasara
    3 months ago

    I have problems coming up with the word I need or coming out with words I didn’t mean to say or remembering names of people I know, but I am also 70 years of age. So how much of this “cog fog” is getting older and how much is MS? Maybe both?

  • Colleen Fegan
    1 month ago

    I agree! but either way, it can be crippling..

  • Ashley Ringstaff moderator author
    3 months ago

    It could be both… That would be something to discuss with your physician for sure.

    But I also deal with the forgetting words and not being able to get the words out… and I’m 30.
    Ms doesn’t discriminate.

    xoxo
    Ashley Ringstaff

  • pmastne
    4 months ago

    Ashley, thanks for posting your experiences with « cog-fog ». I’ve had my diagnosis since 1993, but this is my first time on this forum. I experience the same issues with word retrieval, loss, and spelling as you and the rest of the community experiences. I wanted to share the Rituxin treatment (the chemo that depletes the B-cells of the immune system that contributes to nerve inflammation and therefore symptoms) helps so much. In fact, one of the first ways I can tell I’m due for another infusion is when I start stumbling around for words again! Rituxin has been replaced with Ocrevus in many clinics, however my doctor prefers the Rituxin. Just an FYI for the community to look into in case they have the option to try it. I’m glad I found the forum!

  • Ashley Ringstaff moderator author
    4 months ago

    Hey! Glad you found us! I have heard of Rituxin in the past, but I have not taken it. I’m currently on Ocrevus. I’m glad that it has helped you!
    It’s crazy that even though we all have MS, we’re all affected in so many similar way, but different at the same time. And what works for one person with medicine, doesn’t work for another.
    Hoping and praying for a cure!
    Thanks for reaching out.
    xoxo
    Ashley Ringstaff

  • itasara
    4 months ago

    I often can’t remember a word I am searching for. But then, I ask myself is it just MS or is it Old Age or both. My husband is about 2.5 yrs older than I at age 72 and he has problems finding words now and then and he does not have MS; I do. One thing I do have problems with is memorizing lyrics to music. I have become very dependent on having music in front of me. On occasion I forget how a certain melody starts out of something I know VERY well most of my life, but that is fairly rare so far, but frustrating when it happens.

  • Ashley Ringstaff moderator author
    4 months ago

    I feel like it can be a mixture of both at times, when it comes to memory loss with age and memory loss with MS.
    Sorry to hear you are struggling with cog-fog.

    xoxo
    Ashley Ringstaff

  • Laura73
    4 months ago

    OMG you hit the nail on the head!!!! When it’s just me and my hubby he doesn’t even correct me anymore if he knows what I meant to say. He used to say “ come on you can do it” trying to help me until I told him how much that pissed me off. Because No I can’t do it. In public I don’t know how many times I felt so stupid saying something that made no sense at all. Especially at work. I stopped working about 3 months ago after finally coming to the conclusion that working was making it worse.

  • Ashley Ringstaff moderator author
    4 months ago

    Glad that you enjoyed. Not so glad that you can relate, because it sucks to deal with. But it’s always nice to know that we aren’t alone in our battle.

    Sorry to hear you had to stop working.

    My husband is the same way now, with how you said yours is. He is just like, “I know what you’re getting at, keep going with what you were saying.” Because if I spend too much time trying to focus on like one word i’m trying to get out, i’ll forget the rest of the sentence/story.

    xoxo
    Ashley Ringstaff

  • tigersleeve
    5 months ago

    Ashley,

    I can empathize – not that I know precisely what you have experienced – but near enough.
    Vent all you want! Somebody will relate.

  • Ashley Ringstaff moderator author
    4 months ago

    Yes, I’ve come to figure that out. Almost everyone can relate in some way!

    xoxo
    Ashley Ringstaff

  • bridgettegk
    5 months ago

    I have had COG FOG for several months now, had MRI no flare ups, doctor doesnt know why he mentioned stress?? Frustrating, so seeing new doctor tomorrow for 2nd opinion. Makes it hard to be around people… too may conversations and actions going on, seems to get me overwhelmed.

    When I get tired loose words and I too will say you know what I mean!

  • Laura73
    4 months ago

    Mine just said with a straight face “you have MS” ummm ok thanks for that doc how much do I owe you for that awesome advice.

  • Ashley Ringstaff moderator author
    4 months ago

    I can totally relate to being overwhelmed with too many things going on at once. I wrote about this a bit in “Sensation Overload”
    https://multiplesclerosis.net/living-with-ms/sensory-overload/

    Here is an article that MultipleSclerosis.net wrote up on managing Sensory Overload:
    https://multiplesclerosis.net/living-with-ms/managing-sensory-overload/

    Hope this helps! I also hope that you get answers very soon.

    Best Wishes,
    Ashley Ringstaff

  • Cutisis
    5 months ago

    Back in 2005 I got a possible ms diagnosis but, I have been going downhill for the last year and a half, I fall alot and my muscles are alot weaker than they were and I also have the Cog-fog as you said I have used the phrase you know what I mean ALOT, I always get things backwards and say it all wrong which makes the ones around me get mad, I don’t mean for things to come out like it does but it does. This is literally destroying my relationship, I’m hoping that once my nurologist gets back from vacation and looks at the cd from my mri she can give me some insight on how to fix the way I’m talking I really hate the fact that everyone gets mad at me for it

  • Ashley Ringstaff moderator author
    4 months ago

    I’m so sorry to hear what you’ve been dealing with. I hope you have heard back from your neurologist with results.

    We’re all always here to support you at MultipleSclerosis.net

    Best,
    Ashley Ringstaff

  • spuds
    5 months ago

    Sometimes I will be thinking one word and another, sometimes totally unrelated one comes out. Sometimes it starts with the same letter like, Cookie comes out Complete. I hate this. It’s so embarrassing.

  • Ashley Ringstaff moderator author
    5 months ago

    Oh I know! I blurt it out and then I get this puzzled look on my face cause I have NO idea where that word came from.

  • ISurvived
    5 months ago

    I try not to ever be without my partner at functions. It has been the most humiliating part of this disease.

  • Ashley Ringstaff moderator author
    5 months ago

    Oh I hear ya! I am the same way. It’s like having a safety net there.

  • Carol
    6 months ago

    sjd03,

    I get what you are saying. I do stupid things sometimes without knowing why, haven’t put things in crazy spots yet. I just put something down somewhere and then spend lots of time going room to room over and over again trying to find it. Then, I really get mad at myself. Sometimes, I go to a lot of trouble to make lists, sure that I will be able to make sense of it later, except then I can’t find the list. MS is so frustrating.

  • Ashley Ringstaff moderator author
    6 months ago

    Ohhh trust me you aren’t alone. I used to do written lists, but had to stop cause I misplaced the list. Now I have it on my ‘notes’ on my phone, that way I have it there, without having something that is easily lost…

    xoxo

  • sjd03
    6 months ago

    Hi! I am so glad I ran across your article! While I was reading it I just sat down on the kitchen floor with tears in my eyes. It really hit home with me. I am undiagnosed. Been going to the dr for over a year now and still nothing. I, too, have the speech issue…along with many others. I told my daughter after lunch one day to throw her paper plate in the garbage and to put her fork in the “toaster”. I don’t know why the word toaster fell out of my mouth because I was clearly thinking sink. I put the milk in the pantry, the sugar in fridge…and the othere day I caught myself in the act of putting a dirty dish in the fridge when I was trying to put it in the dishwasher. My kids have gotten used to the speech issues. Even though they laugh when it happens because it can be quite commical what comes out sometimes. I just don’t let them see that it bothers me. When I come across a word I have issues saying they usually just say the word for me and I keep going on with my coversation. If I can’t think of the word I describe it and add the word “thingy” after it. Like scissors would be “the little hand held cutter thingy”. I have felt alone in this since it has started but reading this lets me know that I am not alone. Thank you.

  • Laura73
    4 months ago

    Lol I do the “thingy” thing and explain the item I am trying to say too!!!!

  • ggsmslife
    5 months ago

    sjd03- you are not alone my friend! I say things like that all the time! I have three kids, all grown now but one still at home/college. He monitors my symptoms when he is home and will tell me “mom, you need to sit and cool off your face is red”…or he will finish my sentences or find the word I cant in almost all conversations. When you children are around when you start into this new life with MS you want to shield them. I did for the longest time, but as they got older I let them know a little more as time went on, and now my 21 yr old knows a girl at college that has a “condition” (not yet labeled) but he can relate to her when not of others there can. He has been a huge help to her, and I couldnt be more proud of him. “Word salad”, something I just learned from a tv show my husband and I are watching is a good label for what I think we do. But, if we cant get the people to help us out, then we are still connected and dont feel so odd. Mine would tell me all the time, mom you’ve seen that movie (or show) already. or we have been there….at first I would argue due to my pride of not remembering and trying to figure out why. Now I just go along and say, well I wanna see it/do it again!
    As far as you not having a diagnosis yet, hang in there. With a definitive diagnosis comes a whole different pile of questions, thoughts, and emotions. You have people out here to post to, and I just started and find it so helpful! Stay strong!

  • ggsmslife
    5 months ago

    ashley ringstaff-
    thank you for the response. My husband does get frustrated like you said, and does come back around and try to smooth things out. I know its hard on partners and other family members. I think just recently he has gone online and researched some MS stuff because he is more patient, and wants to go to every doc appt lol. Im all for being in the know and being of help any way he can! I just worry, Im sure others do too, that we dont push them away, or they get tired of our ever changing status of symptoms. Its crazy of me to think that he has even thought along those lines…but it is a small piece in the back of my mind that goes there every once in a while. I like the texting so you can edit, you are right..and emails are good too. Sometimes it is just to hard for me to pick up the phone and call someone due to the oh too familiar dead air when you cant find your words…thanks for the response!

  • Ashley Ringstaff moderator author
    6 months ago

    @sjd03
    While I’m sorry to hear that you are dealing with this, I’m glad that you found my article and this website full of amazing people. The diagnosis process can unfortunately be very difficult, but you have to continue to fight for answers.

    I make up words sometimes when I forget them. My family has gotten used to what I go through, but sometimes it takes them by surprise if things hadn’t happened in a little while.

    People that aren’t used to the craziness look at me really funny, I just stare right back. 🙂 My best advice is to embrace the ‘weirdness’ that goes on, or else you will bet stressing over it way too much.

    xoxo
    Ashley Ringstaff
    MultipleSclerosis.net Team Member/Moderator

  • ggsmslife
    6 months ago

    Im new to this site, but cog-fog Ive known for some time. I feel like it gets worse with each passing year. I too have thoughts, even answers!…in my head and no, they dont always get out of my mouth, I say something unrelated making no sense at all, and i have found here recently, though i dont know how long Ive been doing this…but more than often I just dont talk as much, you know like telling someone about your day “it was good”…and leave it at that when I really had a not so good, OR something really cool happened but i just keep it to myself. And I seem to have an impatient husband (just like began in the last 2 years) that he gets frustrated if im trying to tell him something and i get 2 versions of a response when im not even done. He will do that hand gesture like “go on, hurry up” or he will say yeah yeah whats your point? Actually there is 3 versions, the “i got it i got it”. It hurts my feelings or makes me mad that he cant just wait, hang on every word like when you were just newlyweds…ha! So yeah, ive started keeping things to myself. I do also like to write things down, a note if you will, and he can read it. That actually makes him stop and LOOK at it and it gets translated better. Texting instead of calling i prefer. I can say more, and faster if i can write it down. He does not like texting cuz you can take things 2 ways sometimes. Like you dont feel what the person is texting…if they are mad, sad, aggrevated, etc. Does this sound familiar to anyone? I havent put the milk or keys some odd place but i can get up off the sofa to go do something and i am not out of the room all the way and forgot what i was going to do. I sit back down and it will come back to me, sometimes in a few minutes sometimes hours later. That gets old….

  • Ashley Ringstaff moderator author
    6 months ago

    Hey! I’m sorry to hear that you too have to deal with this annoying symptom and that your husband doesn’t want to listed to things. You aren’t alone in the husbands not wanting to listen. My husband is a really big support to me, but no one is perfect and he has his moments where he gets frustrated with me trying to do/say something.

    He has explained to me after an incident where he gets frustrated, that he isn’t trying to be mean to me or that he is mad at me… but he is frustrated that I am affected the way that I am.

    I think we forget that this is a lifestyle change for our partners as well, and they have to learn how to cope and live with the “new normals” so to speak.

    I do prefer texting rather than calling, because I can ‘edit’ what I’m saying instead of just blurting out nonsense.

    Anyways, I just wanted you to know that you aren’t alone in anything your describing and that you always have someone out there that can relate to you and support you.

    xoxo
    Ashley Ringstaff
    MultipleSclerosis.net Team Member/Moderator

  • ggsmslife
    5 months ago

    ashley ringstaff-
    thank you for the response. My husband does get frustrated like you said, and does come back around and try to smooth things out. I know its hard on partners and other family members. I think just recently he has gone online and researched some MS stuff because he is more patient, and wants to go to every doc appt lol. Im all for being in the know and being of help any way he can! I just worry, Im sure others do too, that we dont push them away, or they get tired of our ever changing status of symptoms. Its crazy of me to think that he has even thought along those lines…but it is a small piece in the back of my mind that goes there every once in a while. I like the texting so you can edit, you are right..and emails are good too. Sometimes it is just to hard for me to pick up the phone and call someone due to the oh too familiar dead air when you cant find your words…thanks for the response!

  • Carol
    7 months ago

    Unfortunately, I have cog-fog way too frequently and it can be embarrassing. Then too, there are times when I am asked a question. I just can’t think of any answer for a couple of days. And I am forever losing things. I put things down and it takes days before I remember where I put them.

  • ggsmslife
    6 months ago

    Direct questions throw me off and the dead silence is felt by anyone standing there until i come up with something. That can be very frustrating. And my kids do this thing “mom you’ve seen that movie, remember when bla bla” and i’m trying my hardest to recall it. Sometimes i’m like Oh yeah but there are times i can’t and even watch the movie again, like it was for the first time.
    You know, for some people living with MS, they dont LOOK sick. I have been blessed to recover from my exasperations pretty well, like still being able to get around without a wheelchair and such. I think it’s hard sometimes for people to remember because you look normal- until you dont. Some people that know me but are more like acquaintances more than close friends dont even know I have it, and it usually doesnt come up right away. My immediate family (husband, and 3 kids that are grown) forget at times too and i know i disappoint them if they want to go do something and i just cant keep up, so a lot of times I push myself when i shouldnt. My face turns bright red and they touch my cheeks and im burning up. They get me to a cool quiet place-they insist/demand it…knowing if i keep doing what i am doing i will pass out. I dont feel it UNTIL i get to that cool quiet place, then i feel aweful. Its like heat exhaustion (duh, right?) But it can be indoors as well, and im usually done for the day, that all over flu like feeling. You’d think i would stop before getting there but i dont feel it like they see it. It can even happen if im watching tv, just relaxing. Thats when i get nervous
    cuz my husband will come in or be in with me and looks over and says are you feeling ok babe you are bright red. Anyone get this?

  • Ashley Ringstaff moderator author
    6 months ago

    My face gets hot/red just sitting down at times. Or I get all splotchy. I don’t know why it happens, and it doesn’t have to be “triggered” by anything either. But yeah, it’s annoying. It happens a lot on the tops of my ears too.

    As for the whole ‘you don’t look sick’ thing… yeah I feel like my family forgets at times that I have MS. Not fully, but it’s not at the front of their mind all the time.
    I’m not able to just ‘forget it’ as easily in the summer months, for obvious reasons. But I can relate to everything you just said.

    xoxo
    Ashley Ringstaff
    MultipleSclerosis.net Team Member/Moderator

  • Shawna1968
    8 months ago

    I hate it!!! Words I know, I can’t even say correctly, and I am always using the wrong word! And yes milk in the pantry, keys in the frig! I feel so stupid, I find things in the wrong place all the time and I wonder why it wound up there! I’m so glad to hear it isn’t just.me loosing my mind!

  • Ashley Ringstaff moderator author
    7 months ago

    Nope! It’s not just you! I literally leave work almost every day and I lock the door… then I get paranoid and turn around and double check that I did for sure lock it, because I can’t remember turning the lock.

  • SweetSunshine
    9 months ago

    I Totally Understand your Frustration. I deal with the same issues and you just want to cry when it happens but your to busy trying to get through it. And no one really wants to feel like they need to start or end Conversations with a “Disclaimer” like *Just in case I Babble or say something Stupid it’s because I have MS*
    But you almost feel that if you don’t someone may look to see what your drinking. It’s such a miserable Disease and for all of the Miserable things that come with it. One would think that it would have more letters than MS. Lol but Seriously!
    Keep your Chin Up. I know people as I’m sure you do as well, that somedays can’t get through a sentence and they don’t have any disease.

  • Ashley Ringstaff moderator author
    7 months ago

    Thanks for sharing! I do know that many other people deal with this and they don’t have any ’cause’ like we do, but I guess I just don’t want people to sit here and judge me thinking that I don’t know what I’m talking about… when I really DO know what I’m talking about.

    It just won’t COME OUT OF MY MOUTH.

    UGH

  • Jacksonlowerkeys
    10 months ago

    I now live 24-7 in cog fog, yet I feel/believe I still THINK and rationalize w/o any deterioration in ability. It is taking the thought from my head and sharing it orally that confounds me. I seem to be able to place my thoughts clearly on the page, but oftentimes spelling simple words sends me to a dictionary. I have a caregiver and ask her if I’m making any sense. I have tried a few times to write my thoughts first what I want to say and then read it. My caregiver states when I do that I am clear and concise. As long as I believe my thinking is not deteriorating I just laugh inside at myself. As an aside, the folks that are responding here about cog-fog are very clear from my perspective.

  • Ashley Ringstaff moderator author
    9 months ago

    Thank you for sharing! I do tend to do better explaining things on paper/typing rather than getting the words out.

  • Carla56
    1 year ago

    My initial MS attack came on at work when I realized I couldn’t think clearly. My co-workers thought I had a stroke. The ONLY symptom I had was an inability to think. After a week in the hospital with steroids pumped intravenously. my cognition didn’t improve. At all. Couldn’t do 1st grade math, (couldn’t add 24 and 19) follow a story in the newspaper or read a book or follow a recipe. I was absolutely TERRIFIED. After finding a new neurologist, he suggested plasmophoresis which was a gift from God. While not 100% the way I was before the initial attack, I am still at work and my thinking is significantly improved. I miss the brain I DID have, but I am thankful for what the Dr did to get my life back. I need to constantly review my work because my concentration isn’t what it was. Fatigue increases mistakes and I find that I don’t see typo’s in complicated emails. I need to print them, put them aside, and re-read them later before sending to save embarrassment. I can only say it was like you might experience with Dementia but I KNEW what I didn’t know – Hard to explain. But Terrifying..

  • Ashley Ringstaff moderator author
    9 months ago

    Hey! Thank you for sharing your experience. I can relate to the double checking of everything that I do at work. It’s embarrassing when you make mistakes that are so easy to not make… like the spelling of a word.

    xoxo
    Ashley

  • Shawna1968
    8 months ago

    Definitely double check and triple check my work, my direct boss knows I have MS, but the big boss in Houston doesn’t know. So I try really hard to get my work done perfectly! What used to take me 15-20 mins now takes an hour!

  • 1x90etr
    10 months ago

    What job do you have?

  • Ashley Ringstaff moderator author
    7 months ago

    I’m a office administrator at a small company.

  • awfk73
    1 year ago

    Hey Ashley, “cog-fog” just happened to me today while I was facilitating a therapeutic group. Like you, in my head I planned what I was going to say. It was something that was supposed to rational and wise. What came out was “ahbaduh…”, made noooo sense at all. It didn’t happen just once but again minutes later. I ended up making some odd statement like, “brain to voice, come in…brain to voice…” Fortunately, my clients were able to laugh with me.

  • Ashley Ringstaff moderator author
    7 months ago

    Oh no! Well, at least your clients were able to laugh with you, not at you.
    This is why I tend to bring a sense of humor to my writing. I feel as if I make fun of my self, then it doesn’t leave room for others to do so. 🙂

  • Navygirl1978
    1 year ago

    Glad I am not alone. I get so frustrated and usually just look at my husband when this happens and say…. Oh forget it . It made me feel a little better to see the results of the poll were 93% yes

  • DonnaFA moderator
    1 year ago

    Hi Navygirl1978! Hooyah!You are absolutely not alone, and we are so glad you are here! Don’t hesitate to reach out when you need us – either here or on the Facebook page. -Warmly, Donna (MultipleSclerosis.net team)

  • DarlaKaye
    2 years ago

    I hate when this happens to me and it happens all too frequently. My biggest challenge is at home, talking with my husband who is a perfectionist. He gets very frustrated with my inability to accurately communicate an idea quickly enough. You have to be quick in this household and I’m not nearly as quick as I used to be and I’m just getting slower. It’s pretty hard on a relationship.

  • Shawna1968
    8 months ago

    Girl I so understand! My husband doesn’t even talk to.me anymore because I can’t carry on a conversation! He is always telling me that “this doesn’t just effect you”.
    He is a highly educated man and he uses big words that I used to not have to look up in the dictionary, but I have too now.

  • Shawna1968
    8 months ago

    Opps this comment was supposed to go up one to DarlaKaye!

  • DonnaFA moderator
    2 years ago

    Hi, DarlaKaye, your husband may be dealing with grief. If he does not have a support system, he may be able to find some understanding and answers in our caregivers forum.

    Please know that we’re here for you, to share information, support, or just to listen. Our community members have shared some tips to help you deal with your cognitive symptoms. We’re glad you’re here. -All Best, Donna (MultipleSclerosis.net team)

  • Kathie
    3 years ago

    Ashley,
    I get “Cog Fog” all the time! I like to call it ‘Salad Mouth” lol, everything comes out all jumbled up! My friends call it: Kathie-isms”. Keep on laughing! It comes with the program right! Just keep smiling

  • 3 years ago

    thanks for sharing this. even when people know i have ms, cog-fog is a symptom that they don’t know about, or understand. it’s hard (impossible?) to explain. especially in situations like you describe, when fatigue sets in, going to bed is really the only option.

  • mascha
    3 years ago

    Could this be why o hate phone calls?They make me anxious.

  • mascha
    3 years ago

    Yep it happens often to me and like you when I am over tired it’s worse.My husband said Aaah you had this for years,as in don’t worry not your MS but realized I have had MS for years so it explains why.Sometimes my mind just goes on empty?Simple question gets asked and I am blank.Had to fill my date of birth a while ago and could not remember?Got asked by my husband 8-7 what is the answer?Being jet lagged and over tired from traveling (still traveling to Australia) I had no answer,I said I don’t know?He looked at me shocked and I felt dumb.Of course I know the answer but my brain just died on that day.I often feel very blonde

  • milesap
    4 years ago

    I got rid of my cog fog as soon as I had CCSVI treatment. My speech improved by 90%. Unfortunatly they were only two symptoms but I’ll take it.

  • wolfeagle
    4 years ago

    Ditzy, Confused, Stoned, Drunk, all of these I have been told by others, that I am. Cog Fog is a good definition.
    A couple of times, from customers on the phone and they would ask me, “are you drunk?” and I would know I was fatigued. That is the hard part, you don’t know.

  • Shawna1968
    8 months ago

    Yes, I have been asked if I’m a closet pot head!

  • Ashley Ringstaff moderator author
    4 years ago

    UGH! It makes you wonder why they call it ‘common sense’ when it isn’t so common anymore!
    What happened to manners? What happened to kindness?

    I have been complimented while I have been out with my kids, because they run to help others when needed. Like opening doors for those who can’t or have their hands full… they say yes ma’am and no sir… and people are just shocked that my kids have manners. It shouldn’t be a shock!!!

  • PamnHouston
    5 years ago

    I’m a little late joining this converation but it resonated with me so vividly! I seem to have a random ‘PAUSE’ button during converations which operates completely without my permission. I can’t tell you how many times I’ve drawn a complete blank while talking to someone (why is it usually my boss?!) and have to scramble for some kind of comprehensive finish to whatever topic it is. This is one of those symptoms that is so misunderstood and the coping mechanisms are very personal. Sometimes something will come out of my mouth and I wonder, “Who said that or was that REALLY a sentence?”. The embarrassment can lead to withdrawal and avoidance of business and social interactions. It helps to hear that I’m not alone!

  • Navygirl1978
    1 year ago

    I like the random pause button thing…… That’s how it feels for sure.

  • Ashley Ringstaff moderator author
    4 years ago

    Know that you are never alone!

    I’ve come to realize that I seem to ‘stall out’ more often if I’m nervous or speaking to someone in a business manner, rather than a personal one…

    It’s what we have to live with, and I wish more people would understand.

    xoxo

  • Livingston
    5 years ago

    How about when you are on a cell phone call with someone, you are trying to think of a word – and the person on the other end of the line says “Hello? Hello?” because they think you have disappeared. No, just taking a a mouth rest to allow time for mental manipulations! LOL.

    Or flailing your arms around trying to describe a word- like pictionary without paper.

    Or blurting out about 5 other similar ideas, but not the RIGHT word.

    Or starting out a sentence with a very solid idea – and forgetting what you were saying right in the midst of the idea.

    Or when I totally forget something someone has told me – or if I’ve told someone something once again, my expression is “Swiss cheese for brains. Sorry!”

    So we just plug along the best we can – and try anything that will make ourselves feel better!

  • Ashley Ringstaff moderator author
    4 years ago

    UGH! I’ve been there and done that.

    When I’m talking to my friends that I met at MSWorld – they know what I’m going through and they try and help me find the word I’m searching for, or give me little reminders to get back on track, and I do the same for them.

    I’ve had the problem, where I forgot I told someone something, so I repeat it… sometimes more than once… and they are like, yes you told me. I feel bad that I’ve repeated it over and over to them, but I forgot that I told them in the first place!

  • tesoroms
    5 years ago

    Cog-fog. Thanks for putting a name to it. It has been difficult to explain to people who are at the receiving end of my cog-fog why it takes so long to find the words that would normally be sliding off the tip of my tongue with ease as well as why it takes me so long to get my thoughts out. My husband for example sometimes does his hand circling motion like the @ sign to get my thoughts moving faster. I am sure that that happens silently in other people’s minds as they are waiting for me to wind up my thoughts. It is very embarrassing as others have described,especially when the nature of my work involves leadership in an academic career where expressing ideas and thoughts are highly valued.

    A few others have shared about how their jobs have been affected by cog-fog. Jobs that require public speaking, presentations, motivational speaking become a source of terror instead of rewarding and exciting. I have had to limit the amount of work I do that involves presentations, public speaking and committee work.

    When I do have to do presentations to a group of people who don’t know me, I prepare power points as props to focus me and the audience on the flow of what I am trying to present. Writing out my thoughts before I present them orally has become my crutch much like the cane I carry around with me so that I don’t get stranded in the middle of nowhere.

    I limit the amount of phone calls in order to avoid the anxiety of the cog-fog. A strategy that I use to communicate more effectively is writing emails that are carefully crafted so that I can pause and find the words and phrases I know are there somewhere in my brain. I can go back and revise what I wrote when the right words finally find their way past those nasty lesions that interrupt the flow of words from my brain to my mouth. I can look up details that I forget and then insert them in the spaces that I leave for those words when they finally get past the lesions.

    I try to visualize what is happening in my brain according to the explanation my neurologist finally gave me. She explained that the lesions that are the cause of many symptoms of MS interrupt the message that the different parts of your brain are responsible for physical functions. If the lesions are in a part of the brain that is responsible for speech and cognitive functioning, then the pathways are broken much like a electrical cord that has been frayed. So I visualize the neurons going back and forth trying to get past that lesion to the part of my brain that is the reservoir holding the thoughts and words that I want to access. Like a bad wireless connection to the internet.

    So, here I am trying to express myself in writing, pausing to find words, waiting patiently until I can push through to my reservoir of words. No wonder we are exhausted. There is so much more activity that we experience than those with non MS brains.

  • Kathy Reagan Young
    5 years ago

    May I recommend a wonderful book by a neurologist working with MS’ers and alike: Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar–Your Brain’s Silent Killers

  • Nani
    5 years ago

    I do this from time to time, especially if I’m tired or too hot/too cold. I don’t get so much embarrassed as frustrated. I used to do presentations to groups and have recently been asked to speak about my MS to a group.

    I can still do talks with groups and talking about MS from my wheelchair I have a few passes for words that won’t come, but there is the issue of ego. I can still be understood because I mean to use the words that came with my college degree, the multisyllabic ones I paid for, but when I speak “multisyllabic” becomes “with lots of syllables” because the more educated sounding words just won’t spill out. I think in some ways it makes me a better communicator (glass is half full) but it also affects my ability to sound authoritative and makes me a bit less credible. Anyway, my bruised ego feels less credible which messes with my self esteem. “Cog fog” can be emotionally damaging!

  • debbieheim
    5 years ago

    Great writing Ashley! I shared it to my page, along with the following comments.

    When those of us with MS talk about Cog Fog, you may find it hard to understand. It’s not that we’ve been unlucky enough to lose our memories (as in Alzheimer’s), yet at times, especially when fatigued (not tired, that’s a whole ‘nother subject), we know what we wanted to say, but it disappears before it makes it to our mouths. You may say to us, “Oh, that happens to me all the time, now that I’m older,” but please understand that it is not at all like that. It is a paralyzing, frustrating feeling that is like the way an Alzheimer’s patient feels when he or she is still aware enough to know what’s happening to them. The good news is that Cog Fog is not progressive, and it comes and goes. The stuff is still in our brains, we just have to wait until it is again available:). Deborah Holmes Heim

  • Nick
    5 years ago

    i don’t really have trouble with forgetting words so I am alright there my big problem has been repeating myself. A few seconds after I say something in a conversation I have a hard time remembering what I said already. So I find myself in front of my class telling them what they have alreday heard from me.

  • Nick
    5 years ago

    i don’t really have trouble with forgetting words so I am alright there my big problem has been repeating myself. A few seconds after I say something in a conversation I have a hard time remembering what I said already. So I find myself in front of my class telling them what they have alreday heard from me.

  • Patricia
    5 years ago

    @Ashley r/t cog fog. As for me it happens a lot. When attempting to handle business or just a simple conversation. I begin to studder sputter and spit is what I call it. Cause first I slur, then I can’t find my words and by studdering to find my words I forget what was the subject. So I explain my condition, get teary and isolate myself to just walking my two pooches. That satisfies me and if I get into a conversation I mainly find myself teaching people why this cog fog is happening to me. Usually they understand, I relax and go home to “shut her down”. It happens but I find that if I privately write things down I can handle the conversations well. Plus recalling names, artists and or history, I look it up on my android phone that has a data plan like a computer. Works for me. But yes I get cog fog often…everyday all day really. Tell people what your issue is and if they don’t get it then talk to those that do. Mingle among the crowd or party outing. But I can’t stand being out in changing weather anyway. I am grossly intolerable to the weather…summer, fall, winter and or spring. It is what it is for me but I manage. The care.

  • Greg-MSfl
    5 years ago

    I was diagnosed in 2003 and retired from my career in 2010. Of all the things I’ve lost to MS, I miss my mind the most. I have the hardest time dealing with “cog fog” which is a perfect term. In my career I was a very comfortable speaker. My vocabulary was sharp and skills of story illustration were so good that people often said I should have been a preacher or a diplomat for the United Nations. Now, I struggle as all of you have described, just to get a simple response or story out. Often people laugh when I blurt the wrong word several times, and then I feel so ignorant and stupid. My wife tells me she’s bothered by the term stupid, since we never allowed our kids to use that mean term. I understand her point but I feel as if I’m going out of my mind at times. Friends and family don’t visit or talk nearly as often and I feel as if I’m vanishing into some background. Not sure what any of us can do about it but sure wish there was a pill or a shot to fix this one!!!

  • trout
    5 years ago

    Greg-MSfl: I had a career speaking/training groups of people in two-day workshops…sometimes two per week all over the western half of the US. But then in 1993, MS set in and ended that career. I had a great vocabulary, fluid speaking style and the ability to weave the concepts together for people. Now I start on some topic, begin jumping rapidly to several others and end up asking people “Where did I start on this?” The psychological impact has been very hard for me to process because I identify with myself intellectually… Although I rarely get embarrassed now, it’s still frustrating to lose words mid-sentence or forget what I was talking about; worse, I forget how to spell some word I’ve known since grade school. Sadly, my explanations of what’s happened to me (so clear in my own mind) don’t come across in a way that helps others really understand.

    I try to remember all the research I’ve read about MS and Cognition, which says we do NOT lose intelligence but rather, we have problems accessing it on a regular basis. The “YOU” you used to know is still there, intact. The “I” I’ve always identified with is still intact. I’m about to go to a clinic in another city to see some pros doing specialized Cognitive Rehabilitation and hope it will ease some symptoms. And I hope they’ll have more strategies for coping with these mental changes. For those of us who identify so strongly with our intellects, I think cognitive deterioration is the MOST difficult MS symptom to cope with and accept, but I also know I need help, that I can’t do this alone; trying that route just leads to defeat and self-incrimination.
    The first step is to get a proper evaluation of cognition by a neuropsychologist. It helped me understand what was happening, what areas I can work on and it became my baseline to measure against in the future. It really helped reduce my fears that I was going crazy or developing dementia. When it comes to “cog fog” I’ve discovered I may not like what I hear but at least I’ll know where my feet are, when I get with folks who tell me the truth. There are a few medications that can help, but I hope you’ll seek out people who can teach you ways to overcome some of the problems and give you a real sense of control.

  • Glenys
    5 years ago

    I say it sometimes too, when I don’t know how to explain something; but so did my grandfather, and he didn’t have the excuse of MS!
    It’s a commonly used get-out-of-jail-free card. You know what I mean…

  • Peaches
    5 years ago

    can definitely relate ((unfortunately)). I don’t think I embarrass easily either. But when this happens, I usually try and make a joke out of it and say “damn it, but am having an MS brain fart”. That way I have let the person know that I have MS and also gives me a little time to get it together.

  • Sue
    5 years ago

    I was diagnosed in February 2013, so pretty recent. Until a few weeks ago I have had relatively mild symptoms (balance, numbness/tingling of feet, some urinary issues). All of a sudden I am stumbling over words on occasion. Like stuttering. Doesn’t seem to be related to anything else and isn’t constant. Interesting, this disease…

  • Horse girl
    5 years ago

    Hi everyone
    I was diagnosed in February 2013 I have cog fog a lot I put febreze in refrigerator last week .I ve been reading a lot about LDN for ms you need to also eat healthy and take supplements w it .I was wondering if anyone knows anything about it .I decided to wait and read everything I can on ms drugs before I begin any of them my doctor wants me to go on avonex .I need to figure out which one rave reviews from people on the LDN.

  • purplecello
    5 years ago

    Thank you Jesus! I’m currently in the midst exacerbation or something and my speech is horrible. The stuttering, long pauses, spasms in my throat its down right impossible to talk. And that’s when I wake up! Oh did I mention that I WAS a Clinical Social Worker. I thought it was bad enough having MS interfere with true love, playing my Cello. Now its effected my ability to have a meaningful career. The funny part is the people that are in my immediate circle tell me that they understand me just fine. And when it happen to them we just chalk it up to MS by association.

  • Sandra Boe
    5 years ago

    Since my diagnosis at 39 in 1998 my husband says I never close cupboard doors anymore, or the fridge door either. I, too, have found refrigerated items in the pantry and blamed my kids who look at me like I’m the crazy one. I’ve decided in hindsight that I must have done that. I’m a former journalist, I often struggle to find the words I want. I forget names, I will be speaking about something, know the word I want, and it will be gone. But as someone in my 50s now, I wonder if some of this isn’t due to aging. Many of my 50-something friends laugh and say they have done the same things. So I am reluctant to blame all of this on MS. But I do know I get brain fatigue, body fatigue and recognize when I simply cannot function one more minute and have to remove myself from present company and hide away in my room. I find it exhausting to socialize. Perhaps the neurons just can’t keep firing off that quickly or for that long. I don’t engage on a personal level too much with people I don’t know well, and stay in the background, listening, which in many cases is probably best anyway as I think generally, as a society, we all talk too much and don’t listen enough. If someone shows genuine interest in hearing more about me and what I do, I might reveal something of myself. But, for the most part, people don’t want to hear about MS or how that impacts my life. Once they hear about my work in the equine-assisted activities and therapies field which includes helping folks with disabilities and youth-at-risk, then they may ask how I got into the work and that’s when my diagnosis will come up, because that is why I got started. Other than that, I don’t talk about it. I don’t feel I have to explain myself.

  • opirnia
    5 years ago

    It happens. I was always good at the game “taboo” (where you have to get people to guess a word but not say the most useful words to help them guess it); now I play that in real life every day–except I don’t know the word until they say it (just all about the word, what it means and sometimes even the first letter).

  • stukawife
    5 years ago

    This explains it perfectly. I own/run a business and talk to many people in the course of a day. Since my husband died last month it is now jsut me running it, so I talk to even more people in a day. Those who work closely with me are used to it and i think other people may not notice (I use a wheelchair so they know there is Something). But it does make it hard to talk sometimes. It is tiring.

  • Curious1
    5 years ago

    I’m finding myself losing my train of thought a lot. I realized while camping last weekend I had to keep asking ‘what was I saying?!’. Thankfully my family & friends were paying attention!

  • kelly
    5 years ago

    i forget mid sentance what i try talking about happenes all the time its a way to kill a conversation lol

  • JimQ
    5 years ago

    I know how you feel the phone is the worst for me Its like a battle between your conscious and subconscious thoughts I mean its like I’m daydreaming and my mouth is awake I seem to daydream allot since I was diagnosed 2009 I’m getting use to it tho Now just say ” Hey I have MS give me a break don’t ever get it “to the people who look at me strangely

  • Saskia
    5 years ago

    Oh this is so much like me! I sometimes can understand each individual word and its meaning, but not be able to decipher what the sentence means,,, For years now, whenever I get to that super cog-fog moment when I cannot find words or express myself, I can get out, “Brain Hole!”. I’ve been saying that for about 30 years now, and everyone just laughs and goes on while I try to rally my brains again,,, I NEVER feel embarrassed anymore.

  • Cas
    5 years ago

    Please don’t worry about loosing an occasional work here and there. Mine has gotten so bad I have chosen not to speak up on many occasions. SO I have gotten very quiet. So enjoy a skipped word here and there and laugh while you can! Blessings to you all

  • Glenys
    5 years ago

    I have the same problem and a friend with MS has it worse, as she says things she wouldn’t normally dream of saying. I felt bad about it until I realized recently that my husband – who doesn’t have the excuse of MS – did the same. We used to think it was me mishearing, but it wasn’t. That made me feel much better about myself.

  • Ashley Ringstaff moderator author
    4 years ago

    I’m glad that you felt better about yourself!

    Oh, my husband is the same way too – I think it’s a husband thing, or something? lol

  • Gail M
    5 years ago

    I do this a lot and I really thought I was alone.. I sometimes know what I want to say but it comes out all jumbled and backwards sometimes. I feel like a blabbering idiot. My husband at least understands and when we are with company he says what I mean so I don’t have to repeat myself, MS has changed me so much, We were playing cards one night with my mom and dad and when it was my time to deal I dealt backwards but it felt normal to me. Thank goodness I was with family.

  • Ashley Ringstaff moderator author
    4 years ago

    I know! I’m so relieved at times that if I do something that is embarrassing due to MS, that it is done in front of my loved ones and not strangers.

    Cause I’ve had it happen in front of strangers and it’s embarrassing, especially when it happens around my husbands fellow firefighters, or something.

    And people wonder why I don’t want to interact as much as I used to.

  • laura
    5 years ago

    Ashley you are not alone I do that all the time!! I will be in the middle of a sentence or telling a story and then all of a sudden the words get lost or they dont come out at all and I studdered!!!! Dont feel bad or embareassed its the ms not us!!

  • Ashley Ringstaff moderator author
    4 years ago

    I’ve learned to laugh at myself now, but at times, when I’m having an all around bad MS time… it just gets soo frustrating that I want to scream!

    xoxo

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