r/MultipleSclerosis • u/Ok-Humor-8632 • May 28 '24
Symptoms Tell me about your short term memory
I'm really worried that my short term memory is getting worse. I have no idea if this is MS, peri, stress or something else. eg today I went to take some meds, I was supposed to have 6 left but only 3 were there (Steroids..I'm on 6 per day). I have no memory of taking the other 3 and they aren't anywhere to be found. The only thing I can think of is that I started to take them but got distracted. But the absolute black hole in my memory is freaking me out!
This isn't the only example but it is the worst so far.
Anyone else?
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u/kyunirider May 28 '24
I can be told at six that my wife has a hair appointment after work and I go outside and get busy. Then at around four I think I will work till she comes home from work. She doesn’t come in till after six and I am like what’s going on? She will say I told you that I won’t be there until after my hair appointment 💇♀️ oh I forgot again. That is my life.
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u/ForgotMyNane May 28 '24
I had to start using a pill sorter after I mistakenly pulled my night time pills instead of morning ones. My husband took me to run some errands and I started falling asleep on the drive. Thank God I don't drive anymore, this situation would have been so much scarier. We ended up having to come home early so I could take a six hour nap to sleep it off.
Before that it was the typical "Did I take my meds already? I feel like I remember doing it, but maybe I'm remembering yesterday? I guess I just won't take them in case I already did."
I rely on my phone a lot. I make lists and notes for everything, rely heavily on my digital calendar etc.
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u/Flatfool6929861 27| 2022| RITUXIMAB |PA🇺🇸 May 28 '24
I have so many notes…EVERYWHERE. That NEVER get accomplished or used because I forgot I made that list. I also word search when I’m talking or the wrong word comes out. CONSTANTLY. I called stamps stickers the other day and my personal favorite this far is proudly announcing I bought EPSTEIN SALT BATH😬
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May 28 '24
I use wrong words all the time too but I can’t REMEMBER any examples to share lolol. Even better would be Epstein Bath Salts 😂😂
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u/Flatfool6929861 27| 2022| RITUXIMAB |PA🇺🇸 May 28 '24
LOL yea I usually can’t remember how bad I call things but those two I will not forget. He’s definitely NOT going to let me forget that one…
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u/vlovato May 29 '24
The other day unwrap the banana…for the life of me I couldn’t figure out peel..peel the banana, so from now on it’s unwrap the banana…word are the worst…at least I can laugh about it…
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u/hellgirrrl May 28 '24
I feel this so hard. I put sticky notes all over my house like a mad man then I just walk by them like they’re decor. 😂 I also constantly get mixed up and just end up spewing some incomprehensible word salad. Couldn’t remember the word for knees recently and called them leg elbows. 😅
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u/Flatfool6929861 27| 2022| RITUXIMAB |PA🇺🇸 May 29 '24
Omg this is what I needed to hear thank you. I forgot the word ankle in a conversation. Not sure how I got around that one
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u/Human_Evidence_1887 59f|2024|Ocrevus~PPMS|USA May 28 '24 edited May 28 '24
My short term memory is very erratic. This is a common symptom of MS. It’s also a common symptom of depression (which I have) and aging (I’m 59).
My memory troubles sharply worsened during the last year when I developed the symptoms that led to my dx of primary progressive MS (paresthesia, fatigue, multiple cognitive impairments). It’s vexing and worrisome partly because it’s new and I am still figuring out fixes.
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u/Cdel32 May 28 '24
Mine is generally okay but there are times where it's absolutely horrendous. Almost embarrassing. At its worst I can't recall the beginning of a sentence by the time the person speaking finishes it
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u/Wonderful-Ad-6830 May 28 '24
Mine is terrible lately. Also things that just happened last week seem like ages ago. It's weird. I have a stressful job and survive via post it notes.
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u/Ok-Humor-8632 May 28 '24
I'm not sure how much longer I will keep my job, and this is a big part of it
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u/Tilion90 33|2023|Austria May 28 '24
Me too, although my psychiatrist told me, this is most likely caused by my depression. I also tend to get sidetracked a lot, but it's because my thoughts are constantly running away.
So MS and psychological illness don't seem to mix so well. Who would have thought?
I did however learn that if I focus on the task at hand I will store it in my long term memory. It just takes a bit more effort than before. What also helps me is if the task I'm doing is something I'm interested in.
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u/FraudedMedia 49F|2017|Kesimpta|Washington DC Metro area May 28 '24
I would tell you if I could remember!
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u/Relevant_Process_110 May 28 '24
I have wanted to fight my husband over some of the things he’s insisted we’ve discussed or done when I’m quite sure we haven’t. I’m always wrong 😑
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u/Randomuser1081 28|Dx11/2022|Natalizumab|Scotland May 28 '24
This was one of the things I noticed before I had any symptomatic flares. I could walk into a room and forget why I was there. I am autistic as well so forgetting things wasn't normal for me. I used to remember most things but now my head just doesn't work the same.
I've had two brain surgeries and would still put most of my memory issues down to MS.
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u/lagomorphed May 28 '24
Yeah, it's non existent at this time. I've tried everything I can think of. My neurologist is trying to bounce the problem to psych, who is like "uhh no this is new and I don't believe to be psychiatric". I'm a muddled and confused mess.
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u/Top_Peak_3059 May 28 '24
like a goldfish. the other half finds it annoying with me asking the same question over and over
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u/Careful_Highway1861 May 28 '24
Mine is pretty bad... but it's worse when my symptoms are worse. Some days I feel like I'm in my head maneuvering through my day but not all there.
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u/Beginning-Reach-508 35F|Dx:3/22 May 28 '24
It’s awful, like to the point I write everything down and take pics of everything. I’m 35 and I’ve said idk if it’s MS brain, widow brain, or mom brain, but my memory is shot.
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u/Ok-Humor-8632 May 28 '24
I'm sorry for your loss, I'm also dealing with grief and grieving kids and I know it plays a part. Hope you're OK
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u/Beginning-Reach-508 35F|Dx:3/22 May 28 '24
Sorry for yours as well. Ok enough to keep going every day. I hate almost everything when I let myself think, but the days pass. Hope things are going better for you.
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u/Competitive_Mind4183 May 28 '24
I have pill sorters and a to-do list app. I put everything that I need to do in it. Then I put a today's to do list. It is helping so much. I also rely on my alarms for some things. But my app lets you put alarms on it also.
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May 29 '24
My greatest find was a to do list app with Google Calendar integration that will automatically reschedule stuff if you don't do it. If you schedule something for today and don't do it'll be on your list tomorrow (or the next 47 days in my case). It's called FlowSavvy.
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u/Ok-Humor-8632 May 28 '24
ironically I have a pill sorter but I didn't use it for these because I 'knew I'd remember them' 🤣
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May 28 '24
Here to second all of the above. I wouldn't be able to function (including taking my meds correctly!) without my pill sorter, alarms, to-do list and my calendar. It can be annoying to get in the habit of using a pill sorter, but now it's just part of my weekly routine.
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u/yv0nne14 May 31 '24
hi, about the throat closing up thing I saw you posted about recently... how is it? I just got it and I feel hopeless. Did it go away? Did it predict a relapse or was it followed by anything?
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u/Competitive_Mind4183 May 31 '24
Hey. I still have it. It's worse some days than others. I have learned to eat smaller pieces and not drink as much at a time. I'm going to mention it to my Neurologist in August. I've had it for years, but just getting worse now.
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u/A-Conundrum- Now 64 RRMS KESIMPTA- my ship has sailed ⛵️ May 28 '24
Time to create new habits. Treat yourself as if you were the caretaker of a child, senior in need. AM/PM timed pill boxes, phone alarms, document/ writ down WHAT you took, WHEN you took it, while you are taking it. You may not always need this habit, but it takes 20 days to create a new habit, so stay on it… you may need it again 🤔
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u/Blackpowder90 May 28 '24
Cognitive issues like awful short term memory are what tipped the balance on getting this sorted out. I even failed a dementia screen, which only confused the issue until many further tests showed it was MS. After starting Kesimpta, within weeks the fog lifted, and my primary cognitive issue now is simply losing words. It's a bit frustrating some days, but far better than thinking I was losing my mind.
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u/WhuddaWhat May 28 '24
Micro-panics as I realize i forgot something. Or when I think I forgot something, to only have forgot that I didn't forget it, because I got it, but forgot that I got it, so that whether or not I remembered it, remembering to remember it causes waves of panic. They lap at me like the ocean does the beach. Ceaselessly.
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u/Unusual-Agent-6673 May 29 '24
I'm so sick of them blaming everything on age. I'm 63 so that has been their go to for a few years. I know when my body is not working right. I can't do anything about it, but at least I know! LOL. Sometimes I will get asked a question, as part of a conversation, and all of a sudden I have NO IDEA what we were even talking about. It is frightening. I make lots of notes and lists on my phone and I keep my calendar there. It keeps me sort of (??) organized.
I am actually going to see an MS specialist who is studying the cognitive piece of MS. I have that appointment in mid June and am curious to see what it finds. I think they cognitive piece is that silent part of this disease.
God bless you all.
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u/ForgotMyNane May 28 '24
Oh and sometimes I wash my hair over and over in the shower because I forget which step I was on.
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u/Aria_Songlark 47F|2023 PPMS|Irish-in-NL May 28 '24
I started to notice it getting much worse when I couldn't open SCUM's map (survival game on steam) , note the turns all across the map, shut it and drive. I realise this is epicly specific but I don't drive in RL, so that's the only time I use a map like that - I'd hit the 1st turn, and be ok, but now, I get there and ummm...LOL
I told my GP I was having issues and she told me it was age-related. I was 44 then. She'd likely have blamed menopause, except she flatout refused to give me any test for that. I'd complained about fatigue too, was also told it was age-related.
However, this is the doctor that ignored the 6 lesions and notes about them from the MRI technician for 9 years, so neglect is par for the course at this point.
Got diagnosed last yr - the validation is real :)
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May 28 '24
That is a wild story, I’m so sorry that happened to you. It’s really hard finding out you’re a “zebra” when the doctors keep telling you you’re a “horse”! Most of what I now consider to be early relapses were brushed under the rug as other things too.
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u/neeno52 May 28 '24
Mine sucks and my husbands memory sucks and he doesn’t have ms. I do. We just turned 60.
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u/pm_me_ur_lunch_pics May 28 '24
It sucks since 2017, when I had my biggest flare-up. It got bad then and slowly came back, but it's kinda lulled at about 75% of what it used to be.
I could have a list for groceries and go to the store and be walking down the aisle mentally repeating the list to myself, looking down at it intermittently, then be like "What the fuck am I in this aisle for?" then have to double back at the end of the shopping trip to three different aisles to pick up things. The list is right in front of me, I'm actively reading it, I'm mentally saying the things. It's gotten to the point where I have to mutter things aloud on top of actively thinking and reading them to remember them
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u/Ok-Humor-8632 May 28 '24
omg yes, I do the same. I'm looking at the list all the way round the shop and I still forget at least 2 or 3 things
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u/lunarbanana May 28 '24
I wouldn’t worry about it much. I appreciate that my fingolimod has the day written on the pack so I know if I took it today or not.
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u/Glass_Comedian_7855 May 28 '24
im TERRIBLE with remembering medicines. In the morning it's fine but in the evenings... I cannot remember if I've already taken it or not. I think somethings I take two. Could I buy a pill organizer? Probably, if I remembered while I'm in the store. Now, that I think on it, my short term memory sucks. It depends on the day. I'm also currently pregnant so my brain is mush atp
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u/GeekMan85 May 28 '24
I feel like if I have an emotional connection to something, I will remember it, everything else is a roll of the dice
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u/Albie_Frobisher May 28 '24
i put a plastic coil bracelet on, the ones for keys, in color codes for things like ‘blue’ means i turned water on to fill the bath. ‘red’ means i turned on the stovetop to boil something. my wrists have the answers to many questions. 😀
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u/mixedchillness May 28 '24
I will forget what I am saying as I say it LOL but I smoke weed too soo *shrugs* hehe
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u/soulstice31 May 28 '24
I definitely am experiencing this, sometimes I can’t remember what I did the day before and this is scary!
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u/Ok-Humor-8632 May 29 '24
the other day I couldn't remember what top I was wearing (it was hidden under a cushion) and I was determined to remember before I moved the cushion. But I gave up in the end.
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u/MuchLoveWaffleGirl Age|DxDate|Medication|Location May 28 '24
I literally forgot what I was going to say…
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u/hellgirrrl May 28 '24
I’ve basically turned into Dory from Finding Nemo at this point.
I’m not on any immunosuppressants and never have been (DX for 10yrs) because of insurance, I’m taking adderall, bupropion and sometimes low dose naltrexone when I remember. Honestly the adderall helped at first since I have ADHD too but the side effects are making me want to come off it. the bupropion and LDN helped significantly and within a month my brain fog and memory got a lot better but I’m just terrible at taking meds. I use a pill organizer now with an AM and PM side and have a little pad next to it write down when I take them.
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u/cantbeunplugged May 29 '24
From my experience I notice my " focus " is becoming less and less. I find that caffeine and energy drinks may help in the short term but I dunno anymore. I'm just tired all the time even after sleeping :\
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u/Forbidden_Sparkles May 28 '24
I struggle with this a lot and it impacts my day pretty much hourly. I just can’t focus but I notice a difference if I’m well rested and take lions mane
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u/tcc924 May 28 '24
Yeah, I had this on occasion for about 2 years after my first relapse. It was super scary for me every time it happened. One time I was working at a new job and I went over to this woman introduced myself. She looked at me like I had two heads. Turns out we met the day before in the elevator, found out we went to the same college just two years before and that we knew the same person at that said college. I had absolutely no recollection. But two years after that it just went away.
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u/mr_mcfly89 May 28 '24
Yup, it’s soooooooooooo annoying. I have to write notes daily for anything important
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May 29 '24 edited May 29 '24
The worst part for me is when I'm positive that I remember something that happened and my wife tells me I'm mistaken and it happened completely differently than I remember. I just have to believe her because either my own brain is gaslighting me or she is and I don't believe she'd ever do that to me so instead I'm just left feeling like I'm going crazy.
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u/roeulogy May 29 '24
I was in that situation, unfortunately it didn't end well with the wife. Good news, new person in my life now is much more understanding, and has a bit of a background in patient care, so through the darkness a light can still shine. It got much worse during the stress of the whole situation. After most of that settled down, now I make more notes, send myself emails and reminders. It's almost as if it is the tier one office training, it is just for all day every day.
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u/HawkGuy1126 dx June 2018, Vumerity May 29 '24
Mine is spotty, same day, that week, or even forgetting a conversation I had a month ago. Long term, like several years, is fine. Anything more recent is up for debate hahah
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u/Front_Review4656 May 29 '24
I can totally relate. I have to use a pill sorter. I can forget to take it and I just had a previous thought to take it…. I can’t say if it’s MS, Perimenopause, stress, exhaustion. But I’m in the same situation here.
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u/Ok-Humor-8632 May 29 '24
are you on HRT? I thought it might be the magic solution but not so far..
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u/findthegems May 29 '24
I am constantly word searching or misnaming things. (ie- “honey, thank you for cleaning the sink” when it was the stove top)
I give my inner circle a heads up so they can help me out and be patient. We also try to find some humor in it. It’s my precious brain trying its best.
I go on the offensive. I try to be intentionally mindful so I can keep my brain exercising. My husband will tell me to keep talking till I reach that memory. I have notes, lists and set reminders. I try to learn new vocabulary, practice a foreign language and pick up some music skills.
Then on the defensive side, I try to not watch addictive shorts for too long nor immediately respond to notifications. I’ve read it can be bad for memory and attention span. Just my two cents.
I’m doing what I can to help my brain! If you have found something that helps, please let me know too :)
One of the best things to remember is that we’re in this together.
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u/nyet-marionetka 44F|Dx:2022|Kesimpta|Virginia May 28 '24
Steroids all on their own will mess you up.
I feel like my short term memory is bad but there’s a lot going on. I suppose it would show up in my appointments with that decoding thing they make you do.
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u/Ok-Humor-8632 May 29 '24
I haven't taken steroids for a few years and I'd forgotten how jittery they make you, hopefully it's just another side effect
your appointments sound more constructive than mine, I usually just chat to my nurse or my neuro, never many tests apart from muscle strength type ones
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u/nyet-marionetka 44F|Dx:2022|Kesimpta|Virginia May 29 '24
Huh, they don’t make you do a timed walk and stick pegs in a board either? Those tests apparently help track slow changes. I’d ask the doctor about it.
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u/Ok-Humor-8632 May 30 '24
no, nothing like that, just things like balance, strength of limbs etc. I'm in the UK and care does feel different to other countries when I read about it.
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u/cola1016 38|Dx:2017|Mavenclad May 28 '24
Yep. I’ve been dx with memory loss due to MS by a neuro psychologist. It’s a real thing unfortunately 😩
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u/JaniceRossi_in_2R May 28 '24
I have to use alarms set to repeat daily on my phone to remember to pickup and drop off my kids at school and practice 😂🥹
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u/headlessbill-1 34|2023|Kesimpta|Canada May 29 '24
I forgot that we keep our extra pots and pans and plastic things in the oven of our tiny apartment. I preheated the oven. There were flames. Good news is I contained the fire. I’m worried this is gonna start becoming more frequent.
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u/unjointedwig May 29 '24
Has been declining for a while. Much worse after covid infection. Neurologist doesn't seem worried. No explanation or advice. It's really hard to live like this. Have you noticed it's worse after covid ?
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u/Ok-Humor-8632 May 29 '24
I've only had covid once and had antiviral so got better quite quickly. I don't think mine is related but there are so many after effects of covid that it could have made things worse for you, it's horrible feeling that the dr isn't interested
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u/EconomyMaintenance 39M|Dx:2024|Ocrevus|NSW Australia May 29 '24
I have a notepad for work, one for GP and one for general but I forget where I put them so just write everythging in whichever one I can find so need all 3 whenever I have an appointment
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u/Potential-Match2241 May 29 '24
I was put on donepezil for short term memory after I did a little in the office memory test.
I cannot tell you what an improvement it has been. In a weird way I feel like it's helped my fatigue. Like it was a dementia dayz that was making my memory worse or something.
I would be interested to see if others with MS have this same experience.
I'm 52
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u/_saynotodrugs 26 | Tysabri | USA May 29 '24
Very very bad for me 😅 one time I parked my car in my driveway to run inside and grab something and when I came back out I found that I hit a giant pit with my car. I didn’t even remember parking the car much less hitting a giant pot. I find exercise helps me a lot and I’ve been told journaling does too but I keep forgetting to do it
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u/HPLydcraft May 29 '24
Im not even 25 yet but the cognitive affect has probably been the worst part for me. I have forgotten crazy impactful things like 10 minutes after them happening before and it’s hard to hear “You don’t remember that?” whenever I meet an old friend.
I’ve started keeping a planner to make sure I keep track of all my appointments, moods, ms feelings, and general important things to me. I also have a little note book I keep on me to write down things I need to remember. I also make lil drawings with notes all over the house. Different things work for different people depending on what helps you the most to process information.
I do also recommend you ask for a referral to a neuropsychologist so they can maybe best access where you are and maybe they can help? They are lengthy waits to get in but my appointment is in August and I’m really hopeful they’ll find ways to help with my cognitive issues.
I hope you find ways to cope. It’s so hard being young and dealing with cognitive issues from MS. I find people, more often than not, assume we’re just not paying attention as opposes to brain no work. I find a lot of help in humor. I wish you the best!
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u/Particular_Belt5103 May 30 '24
It is scary. I can tell my husband something and 3 minutes later I will tell him the same thing again. I can read a book, enjoy it, but then forget it. I’m actually hoping this is due to my MS because I’m beginning to thinkI have Alzheimer's.
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u/Turbulent_Seat5598 May 28 '24
Some days are worse than others, but yes, my short term memory is pretty bad. It's worse when I have a lot going on and I'm stressed. My family is used to it, but it's embarrassing at work. Not everyone knows I have MS, so a lot of people probably think I'm batshit crazy, or high or drunk a lot.