My Multiple Sclerosis Diagnosis (With Tips On How to Get a Multiple Sclerosis Diagnosis)

It was a quiet November morning when my multiple sclerosis diagnosis became official. It was when the doctor looked at me with an expression that was neither soft nor unkind. “You definitely have multiple sclerosis,” he said, the weight of his words lingering in the air like an uninvited guest who refuses to leave.

I suspected he would confirm a multiple sclerosis diagnosis. I wasn’t surprised. Not really. We had been circling the possibility of a multiple sclerosis diagnosis for months, following the trail of strange and inexplicable symptoms, from balance issues to blurred vision, from mysterious fatigue to a relentless sense that something wasn’t quite right. My neurologist had been thorough, sending me to a specialty clinic for answers. Still, hearing the words spoken aloud settled differently in my chest.

They hit like a distant thunderclap—foreseen but no less jarring.

My Search for Answers And a Multiple Sclerosis Diagnosis

The journey to that November morning didn’t begin with the specialist’s multiple sclerosis diagnosis. It started months earlier, when the symptoms that had nagged at me for years became impossible to ignore. Deep down, I suspected multiple sclerosis. There was something about the combination of seemingly random health issues—numbness, balance problems, fatigue, and vision loss—that felt connected, even if I couldn’t yet confirm the thread tying them all together.

I scheduled an appointment with a neurologist, desperate for answers.  I shared my symptoms with him, confident that he would understand the severity of what I was experiencing. I described the falls, the vision loss, the fatigue, the strange sensations in my body. But his response was underwhelming.

At first, he dismissed the lesions on my brain as migraines, pointing to the fact that I had a history of headaches. But migraines didn’t explain the sudden vision loss, the persistent falls, or the strange, tight sensation I felt around my torso—the “MS hug,” as I would later learn it was called.  I read to him my list of symptoms. Something inside me told me that I wasn’t just dealing with migraines. I knew there was more at play, even if the doctor didn’t see it right away. I had been taking notes and I read them to him, but they seemed to fall on deaf ears. Well partially, he did agree to order and MRI of my brain.

Determined to be taken seriously, I returned a month later to review the test results. This time, I came prepared with a printed list of every symptom I had experienced, neatly typed in black and white.

“You have lesions on your brain,” he said. “But this just confirms your history of migraines.”

I handed him my list and said, “What about all these other symptoms?” Handing it to him felt like a small act of rebellion—a refusal to let my concerns be brushed aside.

The doctor read through it carefully, his expression shifting from casual dismissal to focused concern.

“You didn’t tell me about all of these symptoms,” he said finally, his tone quieter now. I was taken aback. I had, in fact, told him about every symptom. But now that they were written down, clearly and comprehensively, they couldn’t be dismissed or ignored. The list was tangible evidence of my reality, and it had a weight that mere words didn’t carry. It was as if putting everything in writing made the situation impossible to overlook.

“I still don’t think you have MS,” he admitted. “But I’m going to refer you to an MS clinic because they know far more about it than I do.”

It was a moment of validation—not that I wanted to be right. But it came with the sobering realization that my suspicions might actually be true. This proactive step played a significant role in how I finally received my multiple sclerosis diagnosis.

When referred to a specialty clinic, the process of confirming MS began in

That experience taught me the importance of advocating for my health. Now, I always recommend that others going through similar health struggles come prepared to their doctor’s appointments with a printed list of symptoms. It ensures nothing is left out, nothing is minimized, and your doctor sees the full scope of what you’re experiencing. Your health is worth fighting for, and sometimes, it takes a little extra effort to make sure you’re taken seriously.

The Timing Was Never Mine to Choose And I Would Certainly Not Have Chosen That Week To Get a Multiple Sclerosis Diagnosis

By the time I found myself sitting in the MS clinic’s office, the stakes felt impossibly high. It was November 2018, a month already steeped in heartbreak. Just days earlier, on my daughter’s birthday, my husband had received a cancer diagnosis: Non-Hodgkin’s Lymphoma. Our daughters were each facing significant health challenges of their own. One was currently in the hospital and had been there for some time. The precarious balancing act of family life felt like it could topple at any moment.

And now this.

I let the words “multiple sclerosis” wash over me, their implications slowly seeping into my consciousness. MS is unpredictable. MS is progressive. MS has no cure. These were the phrases the doctor used, spoken matter-of-factly, as though I could just neatly file them away under “Things to Handle Later.” But how could I? In the chaos of our family’s health crises, I was the sole caregiver, the only one well enough to work, and the bearer of the family’s soon-to-be only medical insurance.

If, or rather when, my symptoms worsened, what would happen to all of us?

My Journey to that Multiple Sclerosis Diagnosis Was a Long One

“How long have you had symptoms?” the doctor asked, pulling me from my spiraling thoughts.

I paused, considering his question. My mind traveled back to three years earlier when I inexplicably fell every day for ten days straight. There were no icy sidewalks or clumsy missteps to blame, just a body that seemed to have betrayed me. I remembered the afternoon I fell three times trying to return to my office after lunch. At the time, I chalked it up to my herniated discs, even though deep down, I knew that explanation didn’t quite fit.

And then there was the day I lost vision in my right eye, an episode that landed me in the emergency room, frightened and confused. In hindsight, I recognized it for what it likely was: an MS flare.

The truth is, MS had been whispering its presence for years—no, decades. The relentless grip of “MS hugs,” those bands of pain squeezing my torso, had been with me for at least 30 years. The bladder and bowel issues that I had silently suffered through? Almost as long. My inflammation markers had been sky high for years.  You have an autoimmune disease doctors aid. But we still hadn’t figured out which one. No one had done imaging on my brain before then.  And yet, it wasn’t until the symptoms became too frequent, too obvious, and too debilitating that anyone thought to name the culprit.

It was startling to realize how many chapters of my life MS had secretly written.

My doctor believed I had been living with MS for many, many years. And during that time it was damaging my brain, damaging my nerves as it remained unchecked and untreated.

The Crossroads of Treatment

As the diagnosis settled in, the doctor handed me a list of potential disease-modifying therapies. “Take this home and research them,” he said, his tone steady but not unkind. “We’ll discuss your decision next week.”

I dove into the research, hungry for answers but wary of what I might find. MS has no known cure, he had explained, but medications can slow its progression and help manage symptoms. I read about the JC virus, a common infection that posed a deadly risk for people with MS. If I tested positive, certain medications could increase my risk of developing progressive multifocal leukoencephalopathy (PML), a rare and often fatal brain disease.

A week later, my blood tests confirmed it: I was JC virus positive. My path narrowed. The medication I chose would have to be one of the few least likely to trigger PML.

I opted to start my treatment journey with Aubagio. It wasn’t a perfect choice—none of them were—but it carried a lower risk. I decided to take a dual approach to treatment, combining traditional medication with a deep dive into diet, alternative therapies, and lifestyle changes. I was determined to meet MS on my terms, not simply as a passive recipient of its whims but as an active participant in my own healing.

Reflections on Resilience

Living with multiple sclerosis is like learning a new language—a language of uncertainty and adaptation, of strength and surrender. It asks you to rewrite the story you had planned for yourself and your family. It demands a recalibration of expectations, a willingness to embrace a slower pace, and an unyielding hope that tomorrow can still be beautiful, even if it looks different than you imagined. Usually grief settles in.

When I look back, I see now that MS had always been with me, quietly shaping my story. I didn’t recognize it for what it was, but its fingerprints were there—in the falls, the pain, the moments of inexplicable fatigue.

Today, I carry this diagnosis not as a burden but as a compass, guiding me toward greater self-care, deeper empathy, and a profound appreciation for the moments of grace that punctuate even the hardest days.

An Invitation to Share the Journey

If there is one thing I’ve learned, it’s that we are never truly alone in our struggles. I hope to share more of my MS journey here—not only the challenges but also the discoveries, the small victories, and the lessons learned along the way.

Life with MS is unpredictable, but it is still life—precious, fragile, and worth every effort to make it meaningful. If my story resonates with you, know that I see you, I understand, and together, we can find strength in the telling and the sharing. Welcome.

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