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The easiest way to say this is I’ve had MS for more than 21 years. I was diagnosed on Valentine’s Day 2000. Many would say I’m far from being newly diagnosed with this progressive disease of the central nervous system. 

How about you? Perhaps you were just diagnosed within the past year, the past decade, or even long before I heard those dreaded four words, “You have multiple sclerosis.” 

I consider myself a seasoned veteran of sorts who has lived through countless experiences with scary, jarring, nagging, unanticipated, never-disappearing and life-altering symptoms that this unwelcome visitor has thrown at me each of these past 7,475 days (as of Aug. 1, 2020).

Still, as much as we collectively feel the urge to decipher and define us all differently because of the length of time in which we’ve individually lived with MS, we each are still newly diagnosed. Here are three essential reasons why we are and why we all should remain vigilant in staying informed and attacking our MS with the same gusto we did from our diagnosis day.

1. MS symptoms have the potential to change daily.

“Unpredictable” is a keyword in the definition of MS. We never know what it’s going to do each of us from one moment to the next. Some days, I have numbness throughout my torso. Other days, the lack of feeling is limited to my limbs. The chest-related numbness isn’t necessarily unexpected, but it’s not constant. Each time it comes around it’s like something new, sort of like when distant friends or family stop by for a surprise visit. Sure, it’s not out of the ordinary to stop in as they’re traveling to their weekend getaway, it’s just not always expected. 

And so, whether it’s a recurring symptom or surprise visitors, you change your plans to accommodate this new set of circumstances.

Then there are times when MS introduces a once-silent symptom to the party. Like when it decided to hit my wife, Jennifer (who has lived with this disease for 23 years), with trigeminal neuralgia six years ago. It was a new and dreadfully painful condition that totally changed her approach in living with MS. An unpredicted reality made Jennifer feel as though she was newly diagnosed all over again.

2. Research is altering what we know about MS, how it’s treated.

With each day, researchers are inching us closer to unlocking what causes MS as well as discovering its seemingly ever-elusive cure. I know we all wanted these things figured out yesterday. Fear not, they are making rapid progress, scientifically speaking.

Just look at the strides they’ve made in understanding the effect diet (think gut bacteria), increased levels of vitamin D, and exercise have in improving the overall health of people living with MS. For example, when Jennifer and I each were diagnosed more than two decades ago, exercise was all but formally discouraged. Now it’s pushed to improve our fitness, endurance, and strength.

Need more proof of how research is perpetually changing the MS landscape? At the time of my diagnosis, there were three disease-modifying therapies the members of the MS community affectionately called the A-B-C drugs (for Avonex, Betaseron and Copaxone). All were injectable and only treated relapsing-remitting forms of the disease. Today, the MS community has at least 17 DMTs from which to choose, and they range from injectable to oral to infusion, and several even are indicated for progressive forms of MS.

This merely scratches the surface for how research and treatments are keeping the MS world in a constant state of flux. So what’s new with MS research? The better question is, “What isn’t new?” 

3. I’m not the same person I was when I was diagnosed (BTW: none of us are!).

A Captain Obvious sort of comment, I know. But as I’ve changed from one day to the next, so has how my body responds to the effects of MS. I look to what I do for exercise as a simple indicator. 

Before MS, I loved to play basketball or even just go and shoot baskets. Granted, I wasn’t very good, but I enjoyed every minute of it. I eventually could no longer feel the ball to dribble or shoot as MS-induced numbness set into my hands. I soon turned to running, and I got pretty good at it. While I never was going to win any 5K races, I was respectable within my age group. That is, until I no longer could overcome the MS-related weakness in my left leg and was falling on the course more than was good for my own safety and my ability to serve as Jennifer’s caregiver.

I now walk around our neighborhood a few times each day. Not the five miles I once was used to running, but new because that’s what I’m able to do in spite of my MS.  

With age and with disease progression, we each are continually pivoting (basketball pun totally intended) and re-evaluating who we are, what we need, and what we are able to do. And as we change, the disease always is evolving, whether we can tell it or not. So yes, the time in which we’ve each lived with MS varies from person to person, but in many ways we all are still newly diagnosed with every new day.