MS cognitive fog is the hardest symptom for me to accept
Even partial paralysis wasn't as demoralizing as cog fog for this columnist
“You only begin to grasp the import of an event – and its larger implications vis-à-vis your life – long after it has entered into that realm marked ‘memory.’” — Douglas Kennedy, “The Moment“
I am reading my first book since multiple sclerosis (MS) fatigue reared its ugly head: “The Pursuit of Happiness” by Douglas Kennedy. This doesn’t sound like a huge feat, but believe me, it means more than I can convey.
I’ve read it before — in fact, it’s one of my all-time favorites — but enough time has passed that while I recall the storyline, I’ve forgotten specific details.
When I was diagnosed with relapsing-remitting MS over the New Year’s holidays at the start of 2017, little did I know how significantly it would affect my life. Naturally, having read about the symptoms of MS after my diagnosis, I knew that fatigue was among the most common of the symptoms.
It took me by surprise, though, when fatigue didn’t set in shortly after my diagnosis. That led me to believe that I had been lucky enough to avoid it. But that luck was short-lived, because when fatigue finally hit me, it was like a ton of bricks.
Damaging my identity
A little over a year after my diagnosis, I experienced a paralyzing relapse. Then, fatigue bulldozed through every aspect of my life — physically, mentally, and cognitively.
I’ve never been an athlete or an extrovert. My creativity and passion for science and writing have always been much more important to me. Without the ability to think clearly, it was as though fatigue had made me a shell of who I used to be.
When fatigue crashed through my life after I lost the use of the bottom half of my body, it was harder for me to deal with the loss of cognitive functioning than it was with the loss of my physical abilities. I felt like I had lost far more of myself to fatigue than paralysis.
The paralyzing relapse kept me from working for most of 2018. But one silver lining was that although I was confined to my red armchair, at least I still had a relatively clear mind. While I felt isolated and needed round-the-clock care, at least I could read, write, and watch TV. I could have conversations. These are all things that have subsequently become largely challenging, despite the medications I’m taking.
Today, while I have mostly recovered from the paralysis (although not fully), fatigue still feels like a never-ending battle that I may never win. I just have to adapt to having it in my life.
An additional challenge
Another dark horse in my story is a recent epilepsy diagnosis due to the secondary effects of MS lesions, which have healed but left scar tissue behind. I am now taking an anticonvulsant medication called Keppra (levetiracetam), which dampens my nervous system even more than it already was due to fatigue. I started a loading dose on Jan. 9, which also happened to be my 32nd birthday.
My only hope is that I achieve some type of symbiosis between fatigue management and medication.
Maybe the next book I read will be a new one. For now, though, I am going to curl up under a blanket with a cup of tea and my old book and be happy that despite it being a baby step, it is still progress.
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.
Really appreciate your article Beth. Keep writing. Best wishes
Thank you Beth for a spot on supportive piece! I look forward to more.
I so understand what your going thru,my MS has followed much your same voyage , loosing my cognitive is the biggest pain I have
Mary, I could have wrote the same narrative you did; however, I have made some improvements with therapies which I discovered and applied. I would say that from 2017 until Feb of 2022 I was impossibly disabled and I did not want to live like I was. I had taken data on a list of fatigue issues: cognitive, physically fatigued, fatigued related mobility issues, Gut issues, skin pain, muscle spasms, depression, anxiety and so lonely as well. I rated each variable from 1-3 twice a day to collect a baseline. I started my intervention protocols and rated my fatigue symptoms twice a day (morning and evening). I am now 25% less fatigued, improved mind, spirit and I am now making plans to meet new goals. 25% better is a lot. In fact, my overall health is better that it has ever been. I would like to tell you more. Email me or text at [email protected] if you want to know more. Danny
Beth while reading what you wrote just broke my heart . Multiple Sclerosis is Not by Any Means a Disease that let's go for Good Behavior.. I have had this Disease for 30 years now , even Still being Stubborn to MS it sure knocks a Good Punch Whenever it Wants. I find that with MS - not being able to Remember So Many Things the Cognitive Thinking is a Hard One I have to say I Dislike it So Much. I cannot even have a Conversation with Anyone without thinking they are Attacking My Intelligence Truth I Don't Know How to Talk with Someone I wish there was a Book that can Help with Not Thinking that your Really Not Under Attack but in the End I forget What I said to Someone and I Forget So Easily What the Conversation was SO to me I don't think I would be a good person for A Person's Help for I Don't nor Cannot Understand what Per-Say a Counselor would say I Forget that Easy. But I wanted to Say to You this Your a True Fighter always Believe in Yourself. Thank You for Sharing
My Neurologist asked me Year's Ago what Do You Want Christine
Really What Do You Want , my response was this I Want The Old Me Back .. Can you Give me that he said No I can't, I said to him Well I'm not going to Sit Back and Let MS take over My Life but as the year's have Passed - MS has it's Control on a lot but I Still Try Everyday
Thanks for your bravery to talk about your challenges. I am dealing with horrible cognitive fog as well and sometimes feel mentally parallelized when trying to get through the work day. I am trying to push through by reading other people's stories and learning of additional techniques and tools to try. I also developed epilepsy and was put on Keppra which made me feel even worse-like a dark cloud was following me. It took me to a low point I hope to never see again. I switched to a different medication and it made the world of difference. I wish you the best.
Totally agree! I was diagnosed in '82.I had to stop driving in 2005, I have not taken any of the DMD'S. It has been difficult, but I live life the best I can.
Stay sharp and strong, even when MS pulls the other way.
Cheers to you,
Thanks for your article, Ms. Ullah. It started my own internal reflection about what bothers me the most about my cognitive disfunction, my cog fog. For me that group of symptoms was especially disheartening too. I feel the inability to fully process information, from words on a page to the intent behind my beloved wife's gentle smile, combined with an overwhelming fatigue where barely a breath comes without a price. I was never what you would consider the best looking boy, nor the best athlete. I didn't come from rich parents or have really any quality that would distinguish me or set me apart from the herd, except my brain. I was gifted a truly generous helping of IQ at birth. No mental hurdle was too high; no puzzle too difficult, and I have used that gift to my advantage my whole life. Now, when an episode of cog fog sets in, there's nothing blissful about my ignorance. I'm very cognizant of my periodic intellectual limitations and so become frustrated and grumpy . My whole attitude sours, and I become a real jerk, a sad, depressed jerk. That sweet old man who enjoys the sound of children at play becomes the old guy yelling at kids to get off his grass. When the fog lifts I spend hours or days trying to figure out how much damage was done, who did I anger or disappoint, what bill did I forget to pay, and what do I need to do to repair it. So, in effect, MS has taken the very best of me, and it breaks my heart. There's "no pill gonna cure my I'll." I'd probably forget to take it anyway.
Well, thanks again for your article. If your intent was to express your thoughts clearly and make others understand cog fog, the: Good work; keep it up.
Cog fog was my most disabling of my MS symptoms, and I have had most of them. It was also my most depressing and angering on my MS journey. The harder I tried to fight against MS, the more fatigued I became and the less I could accomplish. As the journey continued I began to decide to focus on gratitude for what blessings I had, and use this attitude to develop more joy in my life. In the 40 years since my first symptoms, my choice of what I pay attention to in my life journey has made a huge difference in my quality of life. Good luck with your journey.
I have had RRMS fo almost 40 years. I can agree wih you: the hardest symptom is the cognitive fog. My brain doesn't work as fast as in the past and I can't take take part in long conversations, or I loose necessary words. i try to help myself wih reading a lot.
Thank you very much Beth, I too appreciate your article - you bring sense to a world I no longer understand. Keep writing Beth
Just read your article. My wife has MS and I read many articles and posts. But why I am writing is—-I have epilepsy and was taking “KEPPRA and had many side effects. I switched to VIMPAT 10 years ago and it has been an amazing positive change for me. Since it recently became generic the price has dropped but is is still not cheap. However, it has changed my life for the better and it is worth it. Hope it might work for you.
I've lived with MS for 41 years. It has both taken and given. It took away my ability to work as an engineer with both BS and MBA degrees. I had to stop driving in 2005. Back in 2005 I had some neuro-psyc testing and it showed I was cognitively impaired. The doc said, "Darrell, you're demented." Dementia (cognition) is the hardest for me to accept. But, I am lucky to be married to a Physical Therapist! No... MS has taken away, but, it has given me a new appreciation of what I still have. I enjoy being retired and traveling and my grand children. My daughter started an equestrian clinic and now, I'm riding horses! In many respects, MS has made me a better person, Yeah, I had to dispose of the engineering and MBA as well as my private pilot's license. But I still live life to the fullest and I love my friends and family. Handicapped parking is also a blessing! I don't have to walk as far when my wife and I go out to eat!