I went to an ENT about dizziness. A small thing. The kind of appointment you schedule between errands and forget about by dinner.
I described the symptoms, and I watched his face change. He went quiet, and then he wrote me referrals for four MRIs. Four. I had never seen a doctor go pale before, and I don’t recommend the experience. Whatever he suspected, he wasn’t going to say it out loud.
The worst he suspected was Ménière’s Disease, and I had MS. This is the story of the diagnosis, what I think caused it, and (because this is not a Greek tragedy) what it set in motion. It’s a heavier piece than what I usually write.
Stay with me. It ends on the road, not in the ditch.
The Diagnosis, or: A Very Long Fall
The radiologist saw the plaques first: those are the small scars on the brain that multiple sclerosis leaves behind.
From there, the process was less a path and more a rabbit hole. The first neurologist I saw looked at the scans and started me on Tecfidera immediately. At the full maintenance dose instead of the starter dose you’re supposed to ease in with.
Then came the back-and-forths between two cities for paperwork, because bureaucracy does not pause for grief. Somewhere in there I had three meltdowns in a single day. The third happened with a nurse who had called to see whether I’d got the medication and got, instead, everything.
Here’s something you might not have heard about medical crises: the nurses will save you. The same nurse on the phone saved me from a fourth meltdown: told me to go home and don’t worry about a thing until she gets to the bottom of things. It was another nurse, also on the phone, who caught the dosing mistake. It was their collective, somber but supportive reaction that told me to find a different neurologist. And the new one began, mercifully, at the beginning: told me it wasn’t necessarily MS and there was a proper way to find out for sure.
What followed was the unglamorous middle of every diagnosis story. The optical coherence tomography showed nothing. (MS famously damages and slows down optic nerves.) Blood tests that were supposed to rule out diseases that imitate MS? Didn’t do it. Two more MRIs gave my doctor no clue, either. He wanted to spare me the lumbar puncture if he could, so the final word went to a full MS-protocol MRI: a longer, contrast-enhanced scan with a sophisticated device built to answer exactly one question.
It answered it. MS, confirmed.
There’s a strange, quiet relief on the far side of confirmation. The fall stops. You’re on the ground now. That ground may be at the bottom of a rift in your entire life, but it’s solid.
Why Me? A Loose Hypothesis
There’s no family history. Not one person in the last four generations has had MS. Yes, I checked. When you receive a diagnosis like this, you become a very motivated genealogist.
Now, in the spirit of not misleading you: I’ve since learned that most people with MS have no family history of it either. The disease usually arrives without an invitation. So, the clean family tree proves less than it feels like it proves. Apparently, it’s a very complex disease with both genetic and environmental factors. It also goes hand in hand with depression.
Knowing that, my therapist and I hold a hypothesis: severe, sustained stress helped pull the trigger on something that might otherwise have stayed dormant. It’s psychosomatic, like my now-cured migraines. And I had stress and depression to spare.
I was in a relationship that was slowly taking me apart (the kind where you only see the damage from outside) layered on top of older wounds I’d never treated. That’s as much detail as I’ll give; some of it belongs to me. What matters for this story is that my body had been absorbing, for a long time, what my mind refused to process.
Now, I’m not a neurologist, and the science on what triggers MS onset is genuinely unsettled. Research does link stress to relapses, but the origin story is murkier. So, this stays a hypothesis my therapist and I find credible about my own life, not a claim about yours.
But the fact remains that I was bearing a lot of psychological stress. The diagnosis exposed that, and it changed everything.
Life After Diagnosis
Here’s the strange gift in all of this: I was lucky enough to catch it early, without lasting external signs. Which means the diagnosis didn’t function as a sentence. It functioned as a warning call: the loudest one I’ve ever received. In the one year since, it has quietly rearranged my life:
- I started moving.The diagnosis is the reason I took up running, which turned into tennis, which invited bodybuilding as well. I began because a body under threat deserves defending, but I continued because life is just better when you move!
- It ended the relationship.Not immediately, but it became one of the catalysts. When I shared the diagnosis, she didn’t care much, and there are few red flags clearer than indifference to the words “brain lesions.”
- I started pharmacotherapy.Partly because of the diagnosis, and partly because the period around it was one of the darkest I’ve been through. Therapy and psychiatric medication carried me through. My therapist has a line I’ve adopted: “Pills are for people to take.” They’re a tool for dealing with life, not a verdict on your character. It took me too long to believe that, so I’m writing it down for whoever needs the head start. I also have a piece about starting therapy if you don’t know where to begin.
- I audited my habits.A diagnosis like that makes you intensely aware of everything you do to your own body. My 90 days without coffee came directly out of this audit. I finally wanted to know what I was running on, and what was running on me.
- I started a gratitude journal.One entry a day, thanks to this tiny app that got me started with wonderful prompts. It sounds small next to a neurological disease, and it is small. That’s the point; it’s very much within your control. What inspired me for this was how Christina Costa adopted gratitude over fighting when she got cancer. “A body is not a battlefield,” she said. And she’s right.
- And I got a story.A sad one, but mine, with a person in it I respect more than the one who walked into that ENT’s office. Carrying on from something like this and continuing to grow? That changes how you see yourself. I may just have been the change I needed most.
What Happens Now?
I’m waiting on the yearly MRI, the one that watches for disease progression. My honest hope is that with everything I’ve changed, the scans come back quiet. (The relationship is over, training is now part of my life, gratitude is a routine, I’m mindful of everything as much as I’ve ever been, etc.) Hopefully no new lesions, no new activity. Neurologists have a phrase for that state, and it’s one of the better phrases in medicine: no evidence of disease activity.
Will removing the stress actually silence the disease? I don’t know. MS doesn’t tend to simply vanish, and I’d be lying to you and to myself if I promised otherwise. But quiet is possible. So are long, uneventful years. And I’ve stacked everything I can control on the side of quiet.
And if it doesn’t stay quiet? Well, then it and I will coexist. I think I’ve met the worst day of this thing already, and I walked out of it into a stronger body, a clearer mind, and a better life than the one I had before. The disease is a fact. What it means is still mine to write.
If You’ve Just Been Diagnosed
A few things I’d hand you, one traveler to another, a few steps up the road:
- You’re allowed to fall apart first. Meltdowns are not a failure of character; they’re the mind doing its accounting.
- Take the second opinion. My entire story turned on one.
- Befriend the nurses, who will catch what others miss.
- Ask what each test is for, because understanding the process returns a piece of the control the diagnosis took.
- And when the fall stops, start deciding what the warning call is warning you about. Mine was pointing at almost everything, and answering it is the best thing I’ve ever done.
I won’t tell you it will be fine. I’ll tell you that you get a say in what it becomes.