Life is not static; life is ever changing. Whether it’s the breaking of a glass plate, a flowing river that is slowly carving a canyon into the earth or a burning star that over the course of billions of years will eventually die; change is just a part of the natural order of the universe. Of life. So of course that applies to multiple sclerosis (MS) whether it is easily visible or not. If you have MS, chances are the life you lived before your diagnosis is not the same as the life you are living now, which may be different from the life you will live further down the road. Sometimes change is sudden and drastic enough to notice right away but sometimes it creeps about us so slowly and subtly that we don’t even realize it is occurring. There is a difference between waking up to find that you can’t see clearly and realizing one day that you can no longer balance yourself on one leg.
Symptoms can change in an instant
First imagine this; one second you are holding a glass plate in the kitchen and the next second it is broken on the floor in hundreds of little shards. I am sure you are not unfamiliar with this. Change; it only took an instance for it to happen. One moment it is clearly a plate and the next moment it is not. I would say this sudden change is most like a pseudo-exacerbation; you wake up feeling pretty good and decide to get some yard work done but before you can finish you realize your vision is blurring, you can’t think clearly, you feel dizzy and your foot is dragging across the floor. You didn’t wake up with any of those symptoms but by time you go to bed they are there. Just as quickly as they came they are gone because after a night of sleep you feel fine as your body just needed to rest so the inflammation induced by pushing yourself could calm down.
Slower changes are hard to notice
But unfortunately, MS is usually not that simple. Over time, over years, we may experience the subtle accumulation of symptoms that don’t just disappear after a night of rest. This is what we call long-term disability and like a river that is slowly eroding away the earth you probably don’t even notice that it is happening. Last time you saw your neurologist you could walk down the hall heel to toe but when you see him/her 4 months later you can barely make it a few steps before losing your balance. You didn’t even feel like your balance was getting worse but obviously it was slowly changing without you even noticing! Take a picture of yourself today and consider that picture to be your “baseline”. Then look at yourself in the mirror tomorrow; can you tell how much longer your hair is? No, but if you take another picture of yourself in 2 months you will probably be able to see a difference when you compare it to your baseline picture. Your hair is always growing but it’s such an elusive change that you don’t even notice it from day to day. This is why finding a good disease modifying treatment (DMT) is so important; their goal is to slow down or possibly stop the subtle progression of long-term disability that may be occurring without you even noticing! This is also why you usually don’t have MRIs done more than once a year when simply looking for changes that may indicate how active your MS is; the changes may be so small that you could not see them if you were constantly looking because from day to day the difference is almost non-existent but from year to year the difference is easier to see.
Monitor the little things
Personally, I find it helpful to making health-related decisions and managing life with MS if I find a way to try to measure my baseline when performing an activity so over time I can see if my baseline is the same or if I have moved away from it for better or worse. My neurologist may be keeping track of how I walk in a straight line, how my reflexes react to that little hammer and how well I can read those tiny letters from across the room but none of those tests keep track of my memory, my problem-solving skills, my ability to write by hand or play a musical instrument to name just a few things. So I will play a game on my phone (for example) that tests my memory or requires problem-solving skills and if I compare my score today to my score from a month ago I can see if I am getting better or worse at those types of activities even if from day to day I don’t really feel any different. If I write the same sentence down in a notebook every day I can watch how my handwriting may change over time which can help me determine if my fine motor skills are being affected by MS. You can pretty much do this with any activity so long as you have a way of recording your progress. Besides waiting to have another MRI I am unsure of any other way to measure the not-so-sudden changes of MS which I think is very important in helping you decide if what you are doing in life is working to fight your MS or not.