MS cognitive symptoms frighten me more than the physical ones

How will I know if my cognitive issues worsen?

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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Psychological testing indicates that I’m not crazy, but when I share some of the things I’ve done in the Army, people sometimes wonder. I never say that I’m not, because that’s what a crazy person would say. Instead, I provide a three-point answer: One, would I even know? Two, even if I did know, would I care? And three, what is the standard of judgment?

I’m aware the question isn’t serious; it’s just one of those things people say. My three-part answer isn’t serious, either, because I’m not really concerned about the issue. There is something else that concerns me, though. I ask the same three questions about it, but this time I’m serious.

That “something” is cognitive impairment due to multiple sclerosis (MS), and it includes difficulty focusing and processing information. The National MS Society estimates that more than half of the people who have this disease are affected by it. Of all my symptoms, this one worries me the most. An issue that’s invisible to other people is extremely frustrating. One that might be invisible to me is downright terrifying.

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That brings me to the first question: Would I even know if I were experiencing cognitive issues? I’d like to think that I would. I already struggle with what is known as “cog fog” or “brain fog,” which I’m aware of. But I wonder if I’m as aware of it as those around me, or if my awareness will decline if the cog fog worsens. I feel like I’ve gotten a better sense of my physical symptoms as they progress, but I don’t know if it will be the same with cognitive symptoms.

The second question is: If I did know, would I care? For me, that one’s easy and is probably pretty obvious. I’m writing this column because I’m concerned about the cognitive issues I’m having now and worried about the ones I might have later. If they worsen, so long as I’m the least bit aware of them, I’ll care — and not just for myself, but for those close to me as well. I already worry about not being there physically for my loved ones. I despair of any possibility of not being there for them mentally.

The final question is: What is the standard of judgment? I know there are cognitive tests, but it’s not as though I established a baseline before I was diagnosed with MS. I’m looking into establishing a baseline now, but without regular testing, there’s no way to accurately measure any progression. Studies point to the importance of cognitive assessments, and various patient-centric tools are available. It is my hope that this could become part of a multipronged approach to MS care.

I think my fear of cognitive issues could best be compared to the fear of swimming in dark water. The shark fin that I can see above the surface is like the physical symptoms of MS. It’s probably going to raise my pulse, but at least it’s a threat I can see coming. Mental symptoms are like the slimy thing that brushes my foot unseen. My imagination runs wild and makes the unknown much more frightening.

Maybe it’s all in my head. Wait a second, this is MS we’re talking about. It sort of is all in my head.


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.

Linda Sharp avatar

Linda Sharp

I have had MS for 35 years ans cognitive my cognitive problems are hilarious! Yesterday I met a friend for coffee, my husband takes me there as I am no longer able to drive. Before going the room above the cafe to a craft group. I sat down with my friend and my coffee when my husband phoned to say he found my knitting in the car when he got home. More friends arrived and we had to move tables the woman in the cafe pointed out I had forgotten my coat. Then we went upstairs to the group (no knitting) so I helped one of the other ladies. Then time to go home I go down and my husbands waiting for me, 5 mins in to the journey I realise I’ve forgotten my coat, so back we go, I go to the upstairs room (there is a lift) and no coat, so I go to the cafe no coat but they suggest I try reception where I find my coat. My husband is waiting patiently in the car, he doesn’t get cross anymore he accepts that this is a part of our life. And we both laugh at the silliness of the situation. More frightening is tenface that some of the time I don’t know where I am I get very disorientated. I can come out of a place I visit regularly and not know where I am, again Inhave found the best way to deal with this is to laugh at myself (no point getting stressed it makes everything worse) and laughing seems to return me to myself although I do get some funny looks or asked to share the joke. Some have found the ability to see the stupidity of the situation and laugh at myself the most helpful tool for dealing with cognitive problems.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Linda! My wife and I tell others and ourselves that if we couldn't laugh at this sometimes, our lives would have taken a very dark turn.

There's plenty of moments when I don't feel much like laughing, but you're right, nothing can dispel a stressful moment like seeing the humor in it.

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Darien Provence avatar

Darien Provence

Greetings! Cognitive Impairment. Every time I go in to see my Neurologist, he asks me if I have noticed any cognitive impairments. I always quip back at him, “No, Still firing on all cylinders “ and then I ask my husband if he’s noticed anything and we all laugh. So far he’s always said No and I’m reasonably certain he means it and doesn’t say it because he’s afraid to say anything in front of me. I have been diagnosed with MS about 10 years and so far It is under control. The symptoms that I have are very mild. All along one of my biggest fears has been the cognitive impairment. The slimy thing that brushes my foot in the dark water is a great description. It’s there, you know it’s there and there’s no good reason for it to be brushing your foot.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

In one of the courses I taught in the military, we would always admonish the students not to step toward the unknown. In other words, if you are turning, turn forwards in the direction you can see, don't step backwards into what you you can't. That mostly to prevent falling at the worst possible moment, but Rings true for MS and my fears too. With this disease, sometimes I'm being forced to step toward the unknown and I don't like it at all.

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Arlene Mowry avatar

Arlene Mowry

Exactly!! I worry far more about my cognition than my physical symptoms. When I can’t locate the word I want, especially considering how many words are in my brain/computer, I worry people are watching me struggle and want to provide that missing link.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I get frustrated because I think people are thinking I'm taking too long, so I end up making up words to describe something. Example: when I can't think of the word remote control, I will tell one of my kids to hand me the TV turner onner. My comfort with that is that the kids already think I'm losing my mind.

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Alissa Smith avatar

Alissa Smith

Thank you very much, Ben, for writing this. This is also my biggest fear with MS, more than the probability of becoming wheelchair bound. I am a manager of Clinical Nurse Educator. Guess what one of the main components of this role is? Recall recall. I have made a funny little saying, " I don't know a lot, I know a little about a lot". The first time I brought this to my Neurologist, she told me there was a test I could take to determine the severity. The results, however, would have to be shared with the Medical Board and then repeated annually, and could result in a loss of my license. I have not taken the test. Now I have sticky notes everywhere, I take very detailed meeting minutes, and a daily scratch pad that I refer to if needed. Reading this has given me a small sense of comfort that I'm not alone. Maybe one day, people will feel safe to perform testing to improve their quality of life with MS without worry about any negative consequences. Until then, I will continue to request notepads, sticky notes and a variety of erasable pens for Birthdays and Christmas. :)

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I remember on the hospital rotations, I would carry a little quick reference in my scrub pocket that everyone called peripheral brain. At the same time I would see people walking around with some sort of notebook or reference in every single pocket they had. Some take it to an extreme I guess, but I get it. Before I really realized what I was doing, I started using the Memory Palace technique to organize information that needed to be remembered. It has served me well and I still do it, but now I am cataloging things that I don't really think are worthy of being remembered like that. I shouldn't have to put someone's name, or a common word on the wall In My Memory Palace just so I can recall it when I need to.

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Debbie Harrison avatar

Debbie Harrison

Thank you for this article. The cognitive issues are already my worst symptom, I’m very afraid of it getting worse and there’s nothing I can do about it.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for reading it Debbie! It's probably just my ego, but it almost pains me to admit that I'm afraid of something. Well, I'm afraid of cognitive issues. It does make me a little braver to know that I'm not the only one, so thank you for sharing.

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Jane Harrington avatar

Jane Harrington

Thank you for all the posts you do, I read most of them, but thank you especially for this one. My husband has MS and he does not admit to the cognitive difficulties and I am not sure he is aware of them. It is very obvious to the rest of us however as he was once the smartest person in the room and now sometimes struggles with basic math and familiar processes like following a recipe. I would like him to go for baseline testing but his response is always "Even if I am stupider now, I'm still smarter than most of the population." So I guess for him the answers to your three questions are No, No and we'll never know.
Keep writing and I will keep reading.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Jane! I guess that's what worries me too. Will I even realize I'm declining? And, because it worries me, I find myself bristling at anyone who asks me the same questions that I asked myself. That's the awful irony of it isn't it? I'm relying on my wife Etc to tell me if I'm slipping, but I don't really want to hear that I'm slipping. I want a Baseline cognitive test, but when I take another one in the future, I don't want to know if I've moved from the original. I need to. I realize the importance of it. I just don't want to sometimes because I'm scared of what I might find out.

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Tom Fabian avatar

Tom Fabian

My wife Sherry was diagnosed With RMS in 1993. The symptoms of MS are wide ranging and one, loss of mental acuity, had robbed Sher of her career in 2007. She loved her job but when she recognized that her memory and ability to sharply recall, retain and analyze facts had eroded, she grudgingly enforced on herself a disability retirement. A perfectionist and driven professional, she had no other choice and, frankly, it was an act of courage and sacrifice. To combat this loss she challenged herself to compile a family cook book. it turned into a five-year mission starting in 2012. In September 2017 she was ready to publish her first edition. it was distributed among family and friends and she was thrilled

Sher started exhibiting some subtle changes in behavior a few days before Christmas 2017. Having been her care giver for 25 years since she had been diagnosed with remitting relapsing Multiple Sclerosis in 1993, I was becoming concerned that she may be relapsing.

On December 26, Sher awoke confused and disoriented failing to recognize familiar things, where the bathroom was, how to dress and some others I can’t recall. This was a person in severe crisis. I called her neurologist's office that morning and got an appointment on the 28th. By the 28th, Sher had lost the ability to communicate verbally (Akinetic Mutism). Sher had a five year physician-patient relationship with him treating her MS. He did a standard cognitive examination which pointed out evidence of what appeared to be rapidly progressing dementia. He sent us immediately to our local medical center with orders for an MRI, EEG, full Blood Panel and Spinal Tap. My understanding was that we were taking the approach to find out what it is not to give us a starting point from which to figure out what it is. It appeared to me that he suspected something other than MS was at play. He also told us to stop her daily MS medication. The next three days were reasonably peaceful with Sher sleeping a lot but also visibly continuing to worsen in terms of caring for herself. As she declined, my ability to provide a safe level of care was stretched to its limit, and I was not some guy who knew nothing about the care giver role. I was damn good at it with 25 years of practice. On January 1, 2018, Sher awoke and was unable to get out of bed and was unable to walk, something that she had battled in the 90’s and early 2000’s. Symptomatic medication specifically targeting ambulatory issues associated with MS had been developed and she worked her way out of a wheelchair confined life style to a daily regimen of a 1 to 2 mile unaided walk around our neighborhood. We kept her wheelchair for moving through airports and “just in case”. This day “just in case” had happened. I called her doctor and he ordered an emergency admission to the medical center for an in depth evaluation of her condition. After the evaluation she was transferred to a regional medical center for an extensive workup.

The result of that evaluation had some good news and some very bad news. The good news was that it was NOT MS! The devastating news was that it was sporadic Creutzfeldt-Jakob Disease (sCJD). This is a rare neurodegenerative disease NOT RELATED TO MS and NO CAUSE FOR ALARM IN THE MS COMMUNITY. Capitalization is for emphasis. It is caused by misfolding proteins the the brain's grey matter called prions. There are approximately 500 or so cases diagnosed in the United States annually. From diagnosis on January 8, 2018 to her death on February 6, 2018 was a period of 29 days. Fundamentally, Sher's cognitive symptoms due to MS "masked" the early onset of sCJD until such time as she suffered the sudden onset of dementia. Had CJD not occurred, Sher would likely be thriving and taking advantage of all of the wonderful advancements in the treatment and care of people dealing with MS today. I am encouraged that the MS Community appears to be approaching a cure on the near horizon. The CJD Community appears to be entering a phase of research and development similar to that which existed in 1993 for MS. The first clinical trial of a disease modifying treatment has been underway since mid 2024.

I guess my bottom line related to the mental acuity issue with MS is that: careful self monitoring coupled with frequent consults with a neurologist are important; fear is natural but controlling what you can attack is important and not worrying unnecessarily about you can not change is waste of emotional energy - conserve valuable energy; "Studies point to the importance of cognitive assessments, and various patient-centric tools are available. It is my hope that this could become part of a multipronged approach to MS care", as Ben states, means everything. Hope is one of the things one has to never let go of in a fight. Sher was such a fighter when it came to MS. She felt like she was winning! CJD was her "Alamo", a hopeless unwinnable fight. There is growing hope in my recently joined (2019) CJD Community that it can be defeated.

Note to Ben: "This We'll Defend"

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Like I just replied to another comment, your story will be someone's Survival Guide. I know it's going to be part of mine, so thank you for sharing it.

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Susan Kyriakoutsakos avatar

Susan Kyriakoutsakos

Love your take on living with MS. Very realistic and funny. I’ve trained my friends to not say things like ‘I feel bad for you.”
I want them to make jokes about my disabilities, like using a cane. They say I use a cane to get attention. I tell them it is a weapon so watch out.

I do grieve, though, sometimes. I know that compared to your disability this sounds wimpy. I can no longer walk my horse , balance is so bad. However, I have learned to ask people who try to help to just stay away. River goes slowly. We walk together and she remembers each thing I had taught her. This works well. She is still taking care of me, as she has done. She is now helping take care of others- some with depression, severe panic attacks or disabled and in wheelchairs.

Well, you asked for a comment. Bet you didn’t expect such a story.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Susan! On the contrary, I may not expect a story, but that is exactly what I want and need. Never be afraid to tell your story, no matter how Bleak it might sound to you. It is probably someone else's Survival Guide.

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Collette Howell avatar

Collette Howell

I appreciate what this article describes. One of my first symptoms was cognitive decline. I felt like I was losing myself. I could no longer write legibly. I got lost in. My own conversation. Fat forward and it continues to haunt me. I am. no longer able to to follow conversations or even really participate in social gatherings. I stumble over my words and sometimes forget even the subject matter.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Colette! I feel like I can still follow a conversation, but it's hard to participate because my response time is so slow. I can think of the perfect follow-up to what someone else said, but by the time I put the words together and say it, the conversation has moved on.

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Linda avatar

Linda

I arranged a neuropsych assessment as I wanted to know if my cognitive ability was being affected. I did this through MS Australia. I also researched and found B12 and Biotin can help.

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