You Had MS Before You Had MS

This past spring my multiple sclerosis (MS) officially turned 20 years old. Yep, it’s been two decades I’ve been living with the diagnosis of MS.

But like many, if not the vast majority of those who were told the life-changing news around that time (and up to only a few years ago, really) I had the disease well before my 35th year — my age when it all “started.”

I Had Symptoms Well Before My Diagnosis

When my neurologist and I have looked at my medical history, we are sure I had symptoms of MS as early as age 22. There were suspect symptoms while I was in high school. And if I put a mental spade to it, I can dig out little things that may have been advanced warnings as far back as my early teens and late tweens (though we didn’t call them that in my day).

The earliest symptoms we are sure were MS had me flat on my back or crawling to the toilet with my eyes closed to vomit for days.

The world was actually spinning before me when I opened my eyes one morning. My wife called out sick for me (“calling out sick” when you’re in the Coast Guard isn’t really a thing) but had to go into her office in Boston to close a big real estate transaction. When she returned home, she found me clutching the commode as if I feared spinning right off the earth. I did.

It was the most extreme vertigo I could ever have imagined (in fact, it was well beyond what I thought could be experienced).

That’s the one symptom that my neuro and I know was MS, because there have been (mercifully, much milder) episodes of vertigo post-diagnosis.

Were Sleepiness and Clumsiness Also Signs of MS?

Going back further, however, there were times where my level of exhaustion and fatigue matched neither my age nor my level of activity. It wasn’t uncommon for me to lean against a bulkhead and fall asleep standing up in between tasks on my first ship. Not “rest your eyes” sleep. I had to be jostled awake, and it’s reported that I even snored if I found a corner to brace myself against.

Going back further, I tripped over my own feet like a puppy who hasn’t grown into his paws. I had done gymnastics in my earliest youth and was a record-setting pole-vaulter and an award-winning drum major of my school marching band. I had great control of my body … except when I didn’t.

Was that an early manifestation of what we now know is my progressive neurodegenerative disease?

I can only answer the question the way I approach questions of “Is it MS or aging?” and “Is it an exacerbation?”

If it was “normal” before and after, if it just doesn’t fit the narrative, it just may have been MS.

Junior High Teasing May Have Been On To Something

The earliest memory of something that mightn’t have been “right” would have been the number of peers who would comment on my walk.

“I like your strut, Trevis.” Or “Are you trying to walk like that?” were things I remember hearing in the corridors of Newhall Junior High School, and they were aimed at me.

Was MS eating away at my young nerves, but vigorous neuroplasticity of my youthful central nervous system was able to keep up and correct the damage?

Was I just a goofy, clumsy preteen who remembers the little things better than most? Or was it MS, 20-plus years before I lay in the MRI tube for the first time?

Early Diagnosis Now More Important Than Ever

At the end of the day, it really doesn’t matter, because there would have been no treatments, and I’m not convinced my teenage self would have wanted to be diagnosed with a “middle-aged woman’s disease” (as it would have been considered in the 1970s).

The imperative in early diagnosis these days is that treatment is available, and the damage that may be done in those first years can be slowed and later disability can be prevented.

That’s progress, and that’s learning from those who have come before. I call that wisdom.

Wishing you and your family the best of health.

Cheers,

Trevis

My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and read more on Life With Multiple Sclerosis.