In the emergency department, we’re trained to act quickly on clear, testable diagnoses—STEMI, stroke, sepsis. But every day, we also see patients whose stories don’t fit neatly into a protocol. Their test results may look "normal," but their lived experience is anything but.
This is where trust, empathy, and listening matter most. And no one makes that clearer than Leighann Marutz, who was diagnosed with multiple sclerosis (MS) in her twenties. She sat down with Andy Little, DO, to share her journey through misdiagnosis, hospital stays, daily uncertainty, and decades of navigating the healthcare system. Her story reminds us what it truly means to be a patient, and how we, as clinicians, can do better.
It started with a brutal headache and worsening vision. Leighann chalked it up to eye strain—She had three kids to get to school, after all. But when her peripheral vision disappeared, she knew something was wrong.
Her ophthalmologist suspected a stroke and sent her to the ER. Suddenly, Leighann was on a stroke protocol, surrounded by unfamiliar tests, uncertain doctors, and rising fear. "They kept saying time was of the essence, but no one was telling me what was happening," she recalled. "I just latched onto the word 'stroke' and spiraled."
Leighann was admitted to the neuro unit, surrounded by elderly stroke patients. Nurses kept commenting on how young she was. After days of bloodwork, lumbar punctures, and imaging, Leighann was told, "You're stable. We’re sending you home."
Stable meant no progression, but also no answers.
A week later, her neurologist told her it was probably MS—but they couldn’t confirm it until she had another documented attack. That landed hard. "So, I have to wait for another scary thing to happen before I get a diagnosis? Before I get help?"
In hindsight, she realized she’d likely had earlier flares—hand weakness, wrist pain, difficulty signing her name—but they were transient and easily dismissed. "They were so small, they didn’t feel like they warranted a doctor’s visit. Now I know they were part of the puzzle."
Every morning, Leighann does a head-to-toe inventory. Can she move her arms? Sit up? Balance? Are her limbs numb or hypersensitive? "It’s a daily routine. I’m constantly checking in with my body."
In 2016, she had her worst flare yet—complete paralysis on the left side of her body. It started slowly: her leg couldn’t stay extended in the shower. Days later, she collapsed on the stairs.
She’s still on disease-modifying medication, but learned the hard way what happens when she stops. "I felt good. I was on vacation. I didn’t want to do the injection that night. One night turned into three, then weeks. Then the flare came."
Managing MS isn’t just about symptoms. It’s about routines, side effects, and trade-offs. For Leighann, nightly injections involved numbing the skin with ice, bracing for side effects like chest tightness, and managing a lifelong needle phobia. "It’s not something you can just do at dinner with friends. It requires space, tools, time, and mental preparation."
Leighann offered a few key suggestions for clinicians:
Talk to the patient. Even if a caregiver is present, address the patient directly.
Trust the history they provide. MS has no quick test. Trust that your patient can recognize the pattern.
Use understandable language. Leighann learned to speak "doctor." She uses terms like "T-cells," "lumbar puncture," and "neurologic deficit" to gain credibility. But patients shouldn’t have to speak our language to be believed.
Remember, they’re scared. "Even after 20 years, every flare is terrifying. You don’t know what will come back—or if it will."
When she was diagnosed at 29 years old, Leighann worried she’d miss out on life. She feared she couldn’t be the mom or partner she hoped to be. Now, 20 years in, her outlook has shifted. "Everyone’s carrying something. I may not be able to do everything, but I’ll be out there. I’ll figure it out."
Grateful she shared her story, we hope every clinician who hears her story will walk into their next shift with a little more trust, a little more patience, and a lot more humanity. The message I’m taking with me from Leighann’s story: MS patients aren’t just managing symptoms. They’re managing fear, memory, stigma, routines, and systems that often don’t see the whole picture. Let’s be the ones who do.