Do any of you have a very hard time with finding the exact word you want to use? You know, like the above meme about the humming bird, which shall forever to me be known as the vibrating midget bird😂 (if my brain will let me remember that!).
To me it's like brain fog has wrapped the word I want in a thick cloud☁️ that I cannot penetrate. I know that I know the word. I just cannot get to the word. My brain offers up several wrong substitution words, that seem right, but are not. Or I can describe the word, very badly. People usually can figure out what the word is, or a close enough substitution. My brain fog gets worse as the day progresses and my fatigue gets worse. The two seem to go hand in hand. If I over did it the day before and wake up fatigued, my brain fog/cog fog will be worse too.
I ask, because my husband is very worried. I was told by my awful neurologist that this was normal, but... we are changing neurologist because she was awful and we don't really believe much of anything she said. So that was not helpful. We are going to ask the new MS neuro what she thinks at the end of the month. But I'd love to hear from you guys if this is a normal thing or not?
For some reason, for the last month I stopped doing my cognitive function games on my phone and such, so I'm starting all that back up today. Going to try to make a daily habit of it. I remember reading that it would help.
Thank you🧡
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MSFlea
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It is, unfortunately, very normal. I only deal with it during a lengthy relapse or when I'm particularly tired. I don't bother fighting it anymore, but I also don't interact much with outsiders. My family just accepts it.
It bothers me sometimes, because reading, spelling, and proper grammar have always been very important to me, but at the same time I'm still able to communicate. I've found that if I don't make a big deal out of it, neither does my family. I look at it the same way I did when my kids were learning how to talk. My son had no idea what a chainsaw was, so he called it a "noisy knife". We knew what he meant, and that's all that matters in the end.
Thank you for reminding me to refill the feeders for my vibrating midget birds!
Thank you 🧡I guess since I am so new at this, all the new little things can cause my family to worry. Well, me too. I am still able to get things across, it just takes... charades, lol.
Of course it's a worry! You're still learning your new normal, and once you think you have it all under control, up will pop something else and change it to a newer normal. Just try to keep your sense of humor and keep reminding yourself that none of this is your fault.
That happens to me constantly. I try to find the humor in the wrong words that my brain comes up with, because they usually sound so similar but mean something so different! Or sometimes I'll just say, "It starts with an M. It means to..." And when hubby and I figure out the word together, it usually starts with the letter I thought I did. But not always! It goes hand in hand with not being able to remember who performed certain songs, or where you have seen that actor before, etc. It's super frustrating to me, and I'm so happy when the fact I'm looking for bubbles out of the tar pit that is my brain. My husband will say, "Good job." when I can remember what I'm looking for.
I think people without MS have issues with this, too, just not as bad.
I have found that when talking to random people, if I can't find a word, I simply say 'brain fog' and they simply agree with me and roll with it like it is an everyday occurrence and not big deal. So I think you are right and it happens to everyone, just not as bad.
At the end of the day or during hot spells or if I'm sick, I not only have trouble finding the RIGHT word, I will sometimes blurt out the wrong word like the opposite or correlated word like door instead of window. It sucks! Thank God for the grace He and my family show me.
That's really interesting that your brain finds something physically similar like a door vs a window. If I'm trying to say conversation, I'll say something like concentration. And sometimes I get the words in the sentence jumbled up, or when I'm trying to think out loud, I'll realize that I'm contradicting myself as I go. This is worse at night after I've taken meds.
I haven’t been diagnosed with MS (yet) but one of my things I’ve been doing is inserting a cuss word into an otherwise normal sentence and I work as management {shit!} lol. Did I just say shit? Oops 😅
It’s unintentional and I haven’t been aware or even cognizant that I’m doing it except that people keep calling it out 🤦🏻♀️
I had the same thing going in the beginning with the swear words they would roll so easily off my tongue that my manager actually asked me if I’m sure that I have MS and Tourette’s 🤣 We had little kids at home and made a pact to do everything not to swear in front of them.. More than once, we swore in different languages.. A friend at work taught my husband a Russian swear word, I learned plenty when I was taking German in high school , and I knew a few in Spanish too lol.
(pardon me, I am far behind on the blog). I cuss too! Me! Who taught pre-school Sunday school. Who sang in the church choir! Who was raised by Ozzie & Harriet Nelson! Who was raised in a curse-free household! I attribute mine to frustration. But I am aware of what I am saying. Best wishes to you!
🤣You know, I had not noticed that before, but those words don't ever seem to elude me either! And yes, hours or a day later, I'll think of the word, sometimes. Like my brain is teasing me. Oh, is this the word you you wanted yesterday? Here it is! lol.
Started back to playing them again and spending more time reading. I love to read, but I usually read in the evenings, and by then it is a toss up if I'm able to read for long or not, depending on how much I did during the day. Lumosity is great. I'm just playing the free stuff right now. Maybe I will start doing Duolingo again too. I read somewhere that learning a language was supposed to be great for you, but I also read that Duolingo was not the best for actually learning a language, lol. So far in the language I'm learning I've learned to ask someone if they are a horse. I don't think that is useful 😂
I get that too...and it gets worse the more tired I am. Plus to add to the fun...sometimes I mix and match languages and not realize I'm doing that until someone who doesn't speak the other language starts looking at me funny. People who speak both English and Italian just roll with it...until I sneak in one of the few German or French words I know as well.
That has to get really fun! It does seem to get worse when my fatigue worsens, but sometimes it will be nice and early in the morning, when I'm usually as good as I'm gonna get, and it will happen!
So many good responses. I just wanted to say "me too". In fact, brain fog, as you describe it, was one of earliest indications I had that something was not right. Humour helps. You all made me laugh out loud with comments about curse words. So damn true!
My girlfriend said "the thing that makes the bread go brown". Honestly, it is good for a laugh. Except when strangers are thinking you are an idiot of some sort.
When I was first diagnosed with MS, I put in a claim with the VA and had to see a VA Dr. for my eval for compensation. I explained to him that I had issues with memory and the dreaded cog-fog. He told me that I really wasn't having issues, it was jus that my brain was prioritizing what was important and what wasn't important wasn't being recognized or remembered. He ran me through a bunch of tests and sent me on my way. When I left his 4th floor office, got to my car in the parking garage I'd realized I'd forgotten my glasses in his office. Not a high priority for my brain I guess. It frustrates the heck out of me when I can't find the right word for something common. I can see the object I'm trying to describe, know what it is, but just can't name it. Luckily my wife understands.
The VA frustrates me to no end!! I'm glad I don't have to deal with them much. They will twist things in any way they can in order to not take care of retirees and veterans. I'm so sorry this happened to you! 🧡
That happens to me too. Sometimes I'll say the opposite of something I mean as well. I haven't gotten my left and right mixed up since basic training, but my brain will switch the words on me every now and then nowadays!🤣
I try not to deal with the VA unless I have to either. And you're right, they don't really have the vet's best interest in mind. But what can you do besides seek outside help.
I did speech and memory recognize therapy at our local university for a year and it helped immensely 👍🏼 PT also does this. Good luck just a suggestion 👍🏼🙏😉
That sounds interesting! If I can just get this dizziness taken care of, I'll be able to drive further and go to the closest hospital campus where they have things like that available!
I bawled over the words 'trash bags' while cleaning the church one evening with a friend. I tried so hard to make them come out of my mouth. My friend just pulled me into a hug and told me that we would get through it together ❤️ Now, when this happens, I just spit out describing words as if it is a big game show!
Yes, this happens to me too. It was worse early on, but if I get tired it becomes more noticeable. When my words start coming out wrong, my husband will tell me time for bed, lol! It is embarrassing when it happens at work though. I’ve had a few times where I said the wrong word or couldn’t find a word. My coworkers roll with it, but I’m a nurse so don’t want a patient to hear and think I’m incompetent! 🤦♀️
That is understandable. And kudos to you for being a nurse! That is hard work!🧡
I have had moments where I could not come up with the right word in front of other people (that don't really know me), and I'll just say brain fog, and they have just gone 'yeah' shrugged and rolled with it like it was a normal thing. It's only happened a few times, but it was like, oh, cool. (I need a shrug emoji! lol)
Luckily I’m a surgical nurse so my patients are only awake for a little bit, lol! But I did tell my 6 year old to come eat dinner this morning. She said mama, you mean breakfast right 🤣🤦♀️
Yes, very normal as others have said. I also switch words around in a sentence. So instead of saying put gas in the car I reverse it and say put car in the gas.
I also will get stuck trying to say a word and stutter on the first syllable. It takes a conscious effort to stop and try again. It usually has to be a new word or it starts again.
Last problem I have is replacing random words or even sentences when speaking. So if I ask my husband and son to move the laundry from the washer to the dryer I might actually tell them to put the laundry in the garbage can. Or something completely random like guacamole in the dishwasher!! My mind is weird! It likes the words guacamole, garage, garbage, dishwasher and other randomness.
My family have become excellent interpreters!!! Even when we play Uno the rule is I can say anything because Uno probably won’t come out.
Take it in stride, learn to laugh a lot! Above all, hang in there!!
I think your brain and my brain are on the same wavelength!! I do those things too!😭🤣
I will tell my kids to put the dishes in the washing machine. Or the refrigerator.😅 I also reverse my sentence like that. And I get stuck on words like that. These things started before my initial relapse happened, so I didn't think of them as part of my brain fog, but they are worse now. Thank you so much for sharing that! I had no idea why those things started happening, and I didn't tie them together with my MS till I read your reply!🧡
Maybe this is a good example of the difference between MS and aging. Friends have issues with finding words, but I have never heard one get it backwards.
You described my memory problems perfectly. It is possible for me to convert short term memory's into long term. It's not perfect & it's very limited, but it's the best I've come up with so far. I was also disappointed by my neurologist. I had therapy for walking & both her & my therapist neglected to advise me to get stronger. I joined planet fitness & I'm not only walking unassisted, I'm also in the best physical condition in 25 years. Good luck & God bless you.
That is fantastic that you were able to get stronger!🧡 I'm not giving up! I was told I need leg and core strength, but I need arm too! After the PT I went to and had a horrible experience with, I think I'll try on my own. I've been doing yoga I found from one of the UK's MS society's and walking every couple of days at the park. Slowly but surely, I will find what works for me. I'm hoping to find a PT that will work for me. But until then, I'll still do what I can. 😊
Sometimes I'll find that I can't remember something that happened just a few minutes ago (yay short term memory loss!😅) But I'll be able to remember it hours or a day later. Weird. I follow Dr. Gretchen Hawley, and she goes on about neuroplasticity, and I know she means in context with motor function, but it works with everything else too. Hence me trying to do those awful math games on the brain games, even though after my relapse math is something that is extremely difficult for me🧡
Is he upset because he's losing at the charades? My husband has gotten much better. When I first noticed it (years ago) I went to a neuro psyche for testing. Testing came out okay. Several years later I felt I had gotten much worse and went back. He told me I was "intelligent" (nobody's ever called me that before!) but that my brain is buffering, like a computer. So every time I'm struggling, I don't panic (anymore) but picture the little circle going around. It has helped. At this point I'd be afraid to get retested. I think I'd flunk!
I have often felt I am playing charades as people throw out guesses of what I want to say. I am often right about the letter the word starts with. I too get things backwards at times. I also get the pronouns wrong. Commenting on something on TV I will say she instead of he or her instead of him. It is definitely worse with MS, but it is a bit easier because my friends are running into difficulty at times now too, so we laugh a lot.
You’ve hit the nail on the head! I’ve been struggling with CogFog for several months so far. It’s very frustrating to me. There are others on here that have dealt with the CogFog much longer. Good luck to you friend.
I am struggling with trigeminal nerve pain right now and can’t sleep. I just thought my loss of words was part of MS, another unexplainable side effect. It gets so bad that I stop talking around people all together. I don’t have any solutions but playing games on my phone distracts me. I suppose that’s good.
I had to look up what kind of pain that was 🧡I'm so sorry you are going through that! Sending gentle hugs your way!🧡
I was told the brain games like Lumosity and Mindpal were good things work with. Trying to learn a new language is supposed to be really good for working with your brain as well and keeping the neuroplasticity working in your favor.
I get Cog Fog all the time, especially worse when I'm tired, I once went to introduce my husband and forgot his name (we'd only been married 30+ years). But I don't typically use the wrong word, my sister did though. We never knew what was coming out, she once told her kids (4 & 5) to quit playing and get ready for an enema, instead of ready for bed. She never lived that one down!
I almost forgot my zip code. At my neurologists office. I got the first 3 letters out (very slowly) and just blanked on the last two. It took me some time, but I did eventually get them. I've lived here for decade. 😅I knew that I knew them, they were just in that cloud of brain fog that was almost impossible to penetrate!🧡
Yep, I forget words too! When I was in hospital in 2021 (I'd had a dangerous number of seizures the night before), I struggled to tell the nurse what daily medications I'm on when she came doing the medication round! I even forgot the word "commode", and had to sub in "the toilet on wheels" to a healthcare assistant! 🤦♀️ thankfully, she understood that one. The only thing that helped me remember my meds was me saying "lam... lam... lam... lam... lamotrigine! 175mg twice daily!"I think I was more confused with the fact that my husband wasn't able to be by my side (covid lockdown), because now, when I wake up in hospital, I'm not as confused simply because my husband's beside me. I do remember asking him, one time, if he'd let his manager know, to which husband replied, "no, Charlotte. It's Saturday!" We both had a laugh. He then asks me what I remember from before I had my seizures. The last lot, I remember us both laying in bed, about to go to sleep, and I could feel an aura happening. I remember telling my husband I needed to go to the toilet to throw up and he came with me. I asked him for a glass of water after I threw up, which he got for me. I remember him taking the water away from me, and I then woke up in a hospital bed.
I remember things from before my MS got worse better than recent. For example, I remember what CADASIL stands for, and which test they do to confirm it (Cerebral Autosomal Dominant Arteriopathy with Sub-Cortical Infarts and Leucoencethalopathy, tested by doing a Notch3 gene test). I can even do my opening words to calls to customers ("KFC Accrington, Charlotte speaking, how can I help?" Or, "thank you for calling HSBC, you're through to Charlotte, how can I help you today?" I could even tot up the price of a person's order without putting it through a till, back when I worked at KFC, but I wouldn't be able to do that now
I hate losing my ability to remember stuff. My husband gets a bit annoyed when I rewatch whole series simply because I can't remember that we'd already watched it! But, my memory's getting a little better. I know I can't get back all of my lost memories, but I can live with that. If it is important, I'd have it in a note on my phone or the calendars either on my phone or our whiteboard in our kitchen. I know who to call if I can't remember what date/time my appointments are on. That was really helpful when I accidentally dropped my phone into a toilet, and locked myself out of my google account on my old phone so I couldn't get anything from my calendar until Google finally gave me a password reset link. I now have appointments on my calendar, as well as other import days! Technology helps a lot.
For the meds, I keep a list that is shared with my hubby on an app on my phone (that also works on the computer), and I am now keeping a paper list in my purse and backpack. That way I can just hand a copy to new doctors and have them make a copy or keep it. Or I hand them my phone and they can look at the list there, lol.
I got a quick list widget on my phone that my teen had me install so now I can jot down things I'm supposed to remember on it, it's like having a sticky note on my phone. Now if I could just remember to look at it!!
Technology does help a lot! On that app with my med list, I make lists for what I'm supposed to ask each doctor at each visit, and I keep a list of my notes from each visit as well.
That quick list widget sounds pretty ace! I'm used to writing stuff on Samsung Notes, and there's the Lloyds Pharmacy app with my meds if I were to ever forget them 😅 I don't think I would, though. When I was in hospital by myself, back in 2021 because covid lockdown, and I'd been admitted after I had a dangerous amount of seizures, I remember waking up at meds round time in the morning. I had to try and remind myself of what my daily med was, and the dose. Managed it by going, "lam... lam... lamo... lamotrigine! 175mg twice daily!" I think I'm pretty alright with my meds 🤔 could be from my short time as a student nurse 😅
I think I'd be better actually writing my notes with pen and paper 🤷♀️ that way, if I'm speaking to someone over the phone, I don't have to put them on loud speaker to ask/tell them about something as I'm looking at the notes on my phone 🤦♀️ especially unsafe if I'm out in public with nowhere to disappear to. In my opinion, there's a good mix between tech and non-tech stuff, but you do what works for you 😁
All the time. It's worse when I'm tired especially at the end of the day, I have also really started stuttering and it comes out with a bit of a farmers accent😂 If it happens to strangers, I'm just upfront with it and tell them I have MS and with Menopause thrown in the mix I have no hope and everyone just laughs it off. I have found laughter is the best policy and will help you and your family get through the quirks of MS.
Mine is fairly newly diagnosed as well and not a very good neurologist, who in fact I haven't seen since 2020 as it all happened when covid started, so just been plodding through. Thank you by the way for mentioning cognitive games I'm going to try that 🤗 xxx
My husband is also adamant that I read daily, lol. We are both readers, so I don't mind one bit. I had actually started listening to Audible more (I do this while I crochet, so it just kind of continued into time when my cog fog was bad too). So in the mornings when I am not as foggy I do my brain games and I read for a while. There are some books that the person who would read them on Audible was awful and I could not stand it, so this is good, to catch up on those series. And, as much as I don't like Duolingo, I read that learning a new language is Really good for neuroplasticity too. So I'm trying to decide what language I want to learn. I was learning French, but it made no sense to me, learning how to ask someone if they were a horse 🤣 Though that is one I remember, because my teens still ask me to do it, once I told them that was something I was learning, 🤣
And you are right, any time you can laugh about it, with a good sense of humor, it makes it easier. Or it seems to lighten the burden of it, to me. I hope you find a good neuro. I've had an awful neuro. Didn't listen to me, I actually stopped researching things for a while, because what was the point, my neuro wasn't going to listen to a thing I said anyway? So I'm switching to an MS neuro. Initially it was going to be an MS neuro that was over an hour away, but hubby surprised me! Now it's going to be even further away, but is going to be so worth it to see a really good MS specialist neuro. I'm actually excited. 🧡
Thanks for replying. You will have to let me know how the new MS neurologist goes. I get optic neuritis so sometimes find it hard to read and switch off. I limit my screen time when I know it is flaring up, but I so enjoyed reading a book recently, the first in about 4 years, I'm making it my goal to read at least once a month.
I'm playing with diet as well, there is an Australian doctor, guess what I've forgotten his name lol, when I find it will send you the link. Basically no processed foods, I'm taking a D supplement, although having trouble sourcing it at the moment, as it was just D with Olive Oil in a capsule none of the D's with all the talc and junk in, so making sure I have sunshine daily, which has been difficult until recently 😂
I learnt Spanish, I really enjoyed it, we actually lived in Spain for a couple of years but don't get a chance to practice it now, so I just practice it to myself. It's surprising though how many films have Spanish in, I found it easier than French, it is true, you need to keep using the brain, food I've remembered 😂 this site has been a blessing as when you first find out, you are not sure what to do and there are so many websites, it's nice to speak to real people who are going through it, so many little tips you learn and some lovely people, I think just chatting to someone helps 🥰xxx
I have been trying to work on my diet as well. It's really difficult. But I'm sure that slowly but surely, I'll get there. I take a vit D supplement, but also use a sun lamp, usually during winter.
If you have the energy, and there is one in your area, some places you can find a group that meets at restaurants through Meetup just to practice their skills speaking in whatever language they are learning/have learned. I ran into a group one time that was meeting for German here locally. Some spoke fluently, some were just learning. But the goal was to either only speak that language, or for new learners to mostly speak that language, or at least try. Sounded pretty fun, and all seemed to just be having fun with it. If it is something that interests you.
I agree, this site has been a blessing. I'm only diagnosed since Feb of this year, and there is just so much information and misinformation out there, and there are also forums out there where everybody is just so depressed and it is all around who has it worse. I love how here it is about helping each other, lifting each other up, funnies when needed, and so much more. I agree, chatting to someone who gets it really does help. 🧡
There are 72 replies! I am so far behind on the blog! I have this problem at least 3 or 4 times a day. Usually, we girls are verbal! But, yes, this is a problem for me. I am off to read all the responses!
Never behind! Think of it as, casually on time! 😂I've loved reading all the responses and it has really helped me to not feel like all my word flubs are that awful. Some days it is just a few times, some days I feel like I should just shut my mouth and not try to speak at all! I think it really depends an a variety of factors for me, and I can only control a few of them (like not overdoing it, taking all my vitamins and meds, etc). So, since it is not something I can control, I am trying to do what everyone has suggested and just roll with it. Though I am trying to do my daily brain exercises too, in case that neuroplasticity actually decides to kick in and help me out.
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Brain Frog
Believe in your words!!!
MRI scan without checking brain?
