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The Not-So-Sudden Changes of MS

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rldoll67
    1 year ago

    Good read. I have been diagnosed with RRMS, about 8 years ago, and I’ve had a few exacerbations that were what I termed “big ones”. They were obvious and left me with very noticeable and substantial loss of functions.

    Between those obvious ones, my disability also increases in various ways…sometimes, especially now that I am more self aware and understand Uthoff’s phenomenon, I can pinpoint when it happens…just had one a couple of weeks ago and scheduled for an MRI this week to check it out.
    I too keep a log now and I’m ever on guard to determine if my disease becomes secondary progressive….the author did not distinguish or note whether the increase in disability was the onset of progressive ms or smaller, barely perceptible exacerbations…or something related to the rrms that occurs. At this time, I’ve read so much information and much contradiction and making sense of it/figuring out which is accurate is challenging.

  • 1LisaCPA
    1 year ago

    You make some excellent points! Keeping notes has yielded me some important information, as I didn’t recall a symptom until I read it in my notes. I’ve kind of gotten out of the habit recently, but will start doing this again!

  • Matt Allen G author
    1 year ago

    I used to be really good about maintaining my personal blog but for the longest time now I have neglected it. What has really worked for me in that time is I have a whiteboard that I just write my notes on whenever I notice something and then later, when I need it, all that info (including dates) is right there.

  • EmmieBaBa
    2 years ago

    I know that even though I commit to exercise in the new year, instead of being able to do more each day, I can’t. I might do 5 sit ups one day and can barely make it to 3 the next day. You just have to do what you can do, when you can do it.

  • Matt Allen G author
    2 years ago

    That is exactly what I tell people; do WHAT you can do WHEN you can do it. Something is better than nothing.

  • l4u95h
    2 years ago

    Thank-you for this article. Things can go unnoticed. Last December 2016 I had a relapse. Optic neuritis. I didn’t notice my vision had got worse. I did see a minor difference but didn’t think it was to bad. Today October 12 2017 I got my new glasses and can tell they are stronger. During my eye exam I did learn my left eye is really bad. The only thing I ever realized was getting headaches while reading, which I do all the time.

  • Matt Allen G author
    2 years ago

    You might need a second pair of glasses for reading; I am about to figure out the price for a second pair because my eyes and head have started hurting when I try to read as it gets blurry and I have to strain really hard to see text but something tells me this is going to be expensive but I kind of need my eyes…. ugh….

  • Jacksonlowerkeys
    1 year ago

    ZenniOpical.com. $10

  • Tracey
    3 years ago

    this was a well written article…thanks. It does go unnoticed for the most part with me…and then it makes me agitated when it shows itself…”when did that happen?”. Then it becomes the new normal…ever changing. The writing of the same sentence each day is a smart idea. I think I would try really hard to make that sentence look the same each day…make that extra effort…focus super hard…be in denial.

  • Matt Allen G author
    1 year ago

    The new normal, it took me a while to realize “the new normal” is constantly changing even if I don’t notice it

  • Julie
    3 years ago

    Great article!
    It’s like you only get to see your niece or nephew once a year at the holidays. Now to the parents, they haven’t changed much, but when you see them you wonder when they got so tall!

  • Matt Allen G author
    3 years ago

    Perfect way to put it!

  • Grandma5
    3 years ago

    This is so true. Even though I don’t think I am getting worse if I look at what my life was a year ago I can see that I can no longer walk as far as last year. I start getting MS symptoms such as trouble walking sooner than last year and with less exertion. The changes come slowly sometimes but they keep coming.

  • Matt Allen G author
    3 years ago

    really puts the whole “prevent long-term disability” thing into perspective doesn’t it? Looking back, there is so much I wish I had done even thought at the time it seemed like it would make no difference.

  • elsiesue
    2 years ago

    Great article! Explains how I feel different from one day to next. I am curious, what things do you wish you had done? I am relatively a “newbie” as I was just diagnosed 1 1/2 years ago.

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