There’s comfort in putting a name to a multiple sclerosis symptom

I'm relieved to find a possible explanation for recent cognitive issues

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

Share this article:

Share article via email
banner image for Ben Hofmeister's column

I feel like I’ve been in this exact place, saying exactly what I’m saying right now. Have I done this in a past life? Did I dream it and am now subconsciously acting it out in reality? Or is my brain performing a fact-check on its memory system and signaling it with the sensation known as déjà vu?

The French term means “already seen,” though you’re probably aware of it, as most people have this experience at least once in their lifetime. What you may not know (I didn’t) is that déjà vu has an opposite: jamais vu, or “never seen.”

This uncanny feeling occurs when something routine and familiar seems strange, as though you’re looking at it for the first time. I experience it occasionally when writing. A word I’ve used routinely for years will suddenly look odd and misspelled. I sometimes have to look it up before my brain is convinced that it’s a real word.

Recommended Reading
Three people cluster together as they look at a tablet.

Rehabilitation in progressive MS found to help cognitive function

Jamais vu in life with MS

I don’t bring up this feeling of recall without recognition just to share something strange I read online. I think it gives a name to one of the cognitive issues I experience with multiple sclerosis (MS), and that’s a comfort to me. I’ve noted before that I was initially glad to have my MS diagnosis, because I didn’t have to wonder what was wrong with me anymore. Knowing the name of my ailment didn’t fix anything, but it gave me something to focus on. Having a possible explanation for a problem with my thinking feels the same.

My multiple sclerosis symptoms are mostly physical, so it concerns me to the point of obsession when I detect a problem with my mental functioning. Having familiar words, faces, or locations suddenly seem unfamiliar had me questioning my mental fitness. Jamais vu might be the explanation, and I could be experiencing it more frequently for several plausible reasons.

According to a HuffPost article, researchers believe repetition could be a factor in jamais vu. That certainly explains why oft-used words can suddenly seem foreign. But what about the rest of my life with MS?

I frequently say that this disease is consistently inconsistent — and it is, but there’s plenty of routine, too. I don’t walk, so pardon the pun, but I take many of the same steps to accomplish simple tasks each day. When getting into the car suddenly seems brand new, it could be because I’m so used to the routine. I just need to breathe and reset instead of getting frustrated.

Another possible reason for the disconnect with recall is that you’re trying to process something while distracted. Multiple sclerosis is nothing if not distracting, so that makes sense. Opening the refrigerator is daunting, as is remembering what I’m even there for after having to plan how to get there and then carry out each step.

Finally, the article noted that stress has been associated with increased instances of jamais vu. Do you ever experience stress with your MS? I do, too, so I won’t bother coming up with a clever-sounding example.

Instead, I’ll simply say that we may not be able to prevent our cognitive issues, but we might be able to recognize a potential cause and find some comfort in familiarity. I’ll take some over none.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Andrew Scott avatar

Andrew Scott

When I get stressed, I start to shake and my brain closes down. Regarding naming symptoms, I thought my eyes were becoming unfocused when stressed/exercising until I realised it was double vision so, yes I'd agree to be able to name a symptom even if it's just so that you can point to it.

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Andrew! I want to do a future column on the importance of knowing/naming problems and contrast it with the perils of trying to find an enemy, but I haven't got my head wrapped around it yet.

Reply
Letha DeCaires avatar

Letha DeCaires

Great article. I am often pondering whatever experience I am having now is MS related, general aging process related, or something else to check on, or just a one off and let it go…

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

I try to keep them separated, but it's better on my ego to blame MS for everything instead of admitting that I'm not 21 anymore.

Reply
Glenda Hendry avatar

Glenda Hendry

I find I don’t say something simple that would explain my actions or I become angry and lash out when I cannot do something. There’s no magical answer, it’s just the way of MS. My husband of forty years is a saint.

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

I'm married to a saint too. I'd tell her, but she'd just start wanting to be venerated like one.

Seriously though, we're so fortunate to have saintly spouses. So many don't.

Reply
Diana Hughes avatar

Diana Hughes

I've always been a good speller. But in the last few months I've had to stop and think "is that right? " Even the most ordinary words. It's very upsetting. Is it the start of dementia or could it be something to do with my MS? (Officially still RR, but now more'like SP. Tysabri for about 14 years, has been great at slowing the progression.)

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

I've wondered if I notice episodes of jamais vu more because of MS or just because I write more now.

I wrote a lot of medical notes and various reports, risk assessments, briefs, etc before and don't recall it, but who knows?

Reply
Rita McDonald avatar

Rita McDonald

Cognitive symptoms were what led to my MS diagnosis-including frightening episodes of jamais vu. Driving in my own town on the was to lunch at a frequent stop, driving down a familiar highway out of state (at 70mph)! And all of a sudden -poof! Feels as if I’ve never been there before & don’t know how to get to my destination. Tho driving & the destination are all familiar. Struggling to use a tape measure and a book-type restaurant menu(had it upside down & backwards & totally puzzled), face blindness-including recocnizing my own husband of 30 yrs only by his voice. Terrifying! Stress & exhaustion def made it worse-but no matter what it just kept happening. I learned to relax & breathe & things might right themselves in a moment (sadly, not always & not ever the face blindness). This led to a dr visit, a referral to a neurologist, and nearly 1 yr later an MX Dx. (Insurance balked at MRI & multiple appeals needed) The Dx was a relief, tho nothing changed. Till 1 yr later after a paralyzing relapse an MS Specialist recommended Tysabri-it did wonders & I am in much better shape cognatively now! My body & legs have ongoing issues & we’ve moved to other meds-but I’m in a good place now. It was truly horrifying for a time there

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Rita! I was curious if I was the only one who noticed and wondered about things like that.

Reply
Rod Helming avatar

Rod Helming

I can relate to that feeling. I don't remember when I realized I never been here before. And then I transformed to my memory issue is real and maybe I have been here. But instead worrying about it, I just think be excited because it becomes a new adventure to me agan!

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

That's a good way of looking at it Rod! I can stand little memory glitches, especially when there's an explanation. I just hope I never get to the point where I can be my own secret Santa.

Reply
Diandra De Leon avatar

Diandra De Leon

I loved this article. Not enough is said about the cognitive issues that come with MS. Thank you for sharing in such a clever way!

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Diandra! You're right, it seems like not a lot of study has gone into the cognitive problems of MS. That's why I keep looking for answers.

Reply
Sameena Usman avatar

Sameena Usman

Oh my goodness! This happens to me all the time! I totally relate to it. Especially when I’m with my kids and we’re watching a show and I said we’ve never watched it before and they’re like yes we did, we saw this just a couple weeks ago and I truly do not know what they’re talking about. I seriously felt like I’m going crazy. And it’s really challenging because I don’t know sometimes If someone is trying to take advantage of that saying, I said, I would do some thing, but I didn’t or vice versa. It’s a feeling of constantly being Gaslit.

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Sameena! My internet browser history is mostly me looking up words I should know how to spell to make sure they're right. I don't know what I'd have done before Google.

Reply
philip cramer avatar

philip cramer

I have been on Tysabri for 16 years . Wonderful . Same troubles as everyone but none serious I am so lucky .
I to cant remember where I have driven before like places i had to go to every week No idea how to get there.
I to cant remember a movie that I have seen a couple weeks before
Thanks for telling me this is normal. I thought I was losing my mind . I probably am but its good to have an answer...
I think my mind and thoughts are normal. ___________ Probably.

Reply
Trudy Martin avatar

Trudy Martin

I find myself having a problem of saying what I am thinking. At times the words are not there. I am beginning to wonder if it the MS or early onset of dementia.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.