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.
🤣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.
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