Ask the Expert – Cognition

Featuring Randall T. Schapiro, M.D., FAAN
President, The Schapiro MS Advisory Group
Clinical Professor of Neurology (Retired), University of Minnesota

Question: What are some ways to address and treat MS-related cognitive issues?

Answer: Cognitive issues in multiple sclerosis were basically unheard of before 1983.  That was not because they did not exist but because they were not studied.  Subsequently they have been studied extensively and problems with memory, planning, foresight and judgement are clearly present in over sixty percent of those with MS.  It is important to emphasize that everyone with MS is different and all do NOT have cognitive issues.  When evaluating cognition in MS it is extremely important to take into consideration any additional issues of fatigue, depression, and anxiety.  These may falsely lead to a cognitive impairment diagnosis and certainly can contribute to making cognitive impairment appear worse.  There are neuropsychological tests that can objectify cognitive function and are clearly superior to more subjective testing done at the “bedside” or in the office.  Investigators have tried to correlate MRI anatomy with cognitive function with varying degrees of success.  At the present it is very hard to predict cognition by looking at an MRI although clinicians often try to do so.  In my opinion, the best way to manage cognitive problems is to avoid them entirely by prevention with disease modifying medication.  That is one of the reasons we recommend early treatment with these effective medications.  Cognitive rehabilitation through a speech pathologist or neuropsychologist can, at times, be helpful but may be less that satisfying.  Like many symptoms of MS an answer to disability is mobility and remaining mobile and staying active, using your mind is essential.

Question: How can you tell if the “cog fog” is related to MS or other health issues?

Answer: “Cog-fog” is a somewhat slang expression for the feeling that may intermittently layer onto those with MS giving the feeling of increasing cognitive problems.  There is no “officially” accepted physiological explanation for this other than increased fatigue, depression, anxiety.  Medically, accompanying issues such as infection or other medical illnesses e.g. thyroid disease should be explored.  When there is an acute, sudden onset of “cog-fog” or any new symptom, the treating neurologist should be called to review the situation for something that might be contributing to this relapse.

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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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