How Developing Multiple Sclerosis Saved My Life
Occam’s razor states that the simplest explanation is usually the correct one. In my case, Occam’s Razor was wrong.
And it saved my life.
In the summer of 2016, I was going for my final black belt test in Taekwondo. My body was hurting from all the punishment: up to three hours of Taekwondo a day as I practiced, up to 15 hours a week of teaching it to other students. It was a difficult schedule even for a young person, and I wasn’t one; I was a 43-year-old mom with Hashimoto’s thyroiditis, an autoimmune disease that runs in my family.
For a couple weeks, I’d noticed a tiny floater in one eye. It was bright, like someone had fired a white magnesium flare in a slow, burning arc across my vision. But it was tiny, and intermittent, and I’d been assured by everyone around me that floaters were nothing to be concerned about. So I ignored it and continued my punishing schedule.
Ten days shy of my black belt exam, I swung my legs out of bed on a Wednesday morning and realized I couldn’t feel the carpet under my feet. I thought, “Great, I’ve pinched a nerve somehow.” I made an appointment to see my chiropractor the following Monday and went about my life.
By Sunday night, both my legs were numb all the way to my groin. I could still walk, climb stairs and drive my car, but I’d accidentally cut my leg on a sharp object and didn’t feel it. I had to do self-checks.
Monday, after the chiropractor worked me over, he gave me a worried look. “I think you need to go to the emergency room,” he said.
I replied, “Really? We’ve got to get ready for our trip to Florida after my black belt test next weekend.”
The chiro looked at me like I’d just said I was planning on flying to the moon.
But a long night at the ER became a non-diagnosis. An MRI of my lumbar spine showed nothing. My bloodwork was normal. I was still functioning — only my sensation was messed up. I was sent home with instructions to rest, take anti-inflammatory medicine and follow up with a neurosurgeon. With my test and a trip to Florida waiting in the wings, I almost ignored that, too. Only repeated phone calls from the hospital ER shamed me into making the appointment I needed.
I was flung through more MRIs, more bloodwork, more examinations. The neurosurgeon found nothing other than a little scarring in my spine which would explain the numbness, but not the severity of it. He looked perplexed. I asked if I should postpone my trip to Florida. “No,” he said. “Take the trip.”
I had the uncomfortable feeling that he thought I might not get another chance for a long, long time.
I reluctantly rescheduled my black belt exam and took the trip.
I came back to another MRI, this time of my head rather than my spine. My third MRI in as many weeks. I did the test (reluctantly, as I’m claustrophobic), went home and went about my life with numb legs that already felt like they were getting better. I solemnly resolved to ignore all this medical crap and get my life back to normal as quickly as possible.
The tumor they found in my eye was so aggressive it had grown from nothing to the size of a grape in a matter of weeks.
I had listed my family history of multiple sclerosis (MS) as part of my very first workup with the neurologist. I asked if MS was a possibility, and if the numbness in my legs didn’t warrant a lumbar puncture to check. She brushed me off, because Occam’s Razor states that the simplest explanation is usually the right one. In my neurologist’s words, “Your cancer is a fact. It would be irresponsible of me to consider any other diagnosis.” The scarring in my spine and the numbness in my legs were quickly attributed either to myelomalacia (spinal bruising caused by too much taekwondo) or to paraneoplastic syndrome, a “great big garbage bag of symptoms” sometimes caused by cancer.
I had to finish my treatment for ocular melanoma (OM) (two surgeries, a week of implanted radiation, six months of adjuvant chemo to prevent metastasis as part of a clinical trial) before anyone took a second look at what had put me in the ER that summer. The original numbness in my legs had resolved itself, but shortly after finishing my clinical trial two years later, I developed a new numbness over half my ribs.
For those two years I had dutifully listed my family history of MS as part of every neurology workup. I asked my neurologist more than once, point blank, about testing for MS. She had refused to consider it (“Just because a family member has MS doesn’t mean you do. You having MS too would put you very much in the minority”). But this new numbness, two years later, she (extremely reluctantly) admitted warranted a closer look. She ordered the tests.
Now I had lesions in not just my spine but in my brain, too, and a CSF panel that looked like a cat had been at play on the ten-key part of a keyboard. I hadn’t started just one major disease process in summer 2016, but two: ocular melanoma and multiple sclerosis. Occam’s Razor had failed spectacularly that strange summer.
And it had saved my life.
Were it not for the persistent numbness in my legs, I would not have sought medical help. Were it not for the medical help, the cancer wouldn’t have been found in time to treat it. Because I had no symptoms other than a floater, I would have died fast — think “six months to live” fast.
Even my neurologist’s foot-dragging served a purpose. Had the MS been found before the cancer grew to a size that could be picked up on imaging, I would’ve been given a regimen of immunosuppressive drugs to treat the MS… and the cancer would have gone taken off. I might not have had even six months. My OM presented itself at the perfect time to keep me from accidentally killing myself with the wrong MS medication.
Every moment of two and half years of hell happened exactly the way it needed to — in any other order, at any other time, in any other way, I wouldn’t still be sitting here to type this.
As much as I don’t want to give MS anything, I have to give it its due: MS saved my life.
Getty image via MangoStar_Studio