MS cognitive symptoms frighten me more than the physical ones

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.

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.

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.

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. :)

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.

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.

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"

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.

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.

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.

Spot on and that’s my biggest fear as well. I don’t feel like I’ve lost any of my cognitive skills but wouldn’t I be the last to know? Plus, I’m getting older with more gray hair. What have i lost to MS vs age. I figure my best defense is to keep being mentally engaged with work and volunteer stuff be it is a concern that’s always with me.