A Rough Start: My First Neurologist Experience
The neurologist who first diagnosed me with MS had a terrible bedside manner and did not instill confidence in my ability to fight the disease head-on. That was one of the many reasons I avoided seeing a neurologist for seven years after my diagnosis.
When my symptoms became impossible to ignore, I knew it was time to find another doctor. But where to start? Fortunately, my brother and his girlfriend, who lived in Chicago at the time, wanted to help in any way they could. She had a connection with one of the best MS doctors in the area and managed to get me an appointment. Chicago was a four-hour drive from where we lived, but I was willing to make that sacrifice to see one of the best.
A Long Journey for Disappointment
My appointment was scheduled for the middle of the day, so Jeremy and I decided to drive up and back the same day. The drive there felt endless, with countless thoughts racing through my mind. This doctor was supposed to be the best—surely, she would have answers. Maybe even miracles.
During the appointment, she examined my eyes (normal), my reflexes (hyper-reflexive), my balance (poor), and my hand-eye coordination (good). She reviewed my previous MRI scans and spinal tap results but did not require new imaging. She prescribed Betaseron, ordered physical therapy, scheduled a follow-up in four months, and sent us on our way.
As soon as we left the office, the tears came. We had made an eight-hour round trip for… that? It felt no different from my experience with the first neurologist. I couldn’t believe this was my reality. For years, I had lived in denial, but now I had to truly process my diagnosis. It was like being diagnosed all over again—except this time, I couldn’t ignore it.
I would have to learn to inject myself with Betaseron every other day and start physical therapy to improve my balance and leg strength. MS was slowly taking over my life—or so it felt.
Starting Betaseron: A New Challenge
I was very nervous about starting Betaseron. I wasn’t afraid of needles; that was just a minor inconvenience. My real concern was the potential side effects. Most patients experience flu-like symptoms—headache, fatigue, fever, chills, and muscle aches—after injections, which usually subside after a few months. How was I supposed to work, care for my boys, and live a normal life if I was sick every other day?
When the Betaseron nurse arrived to teach us how to administer the injections, Jeremy’s parents took the boys to a playground. The process was simple: mix the medicine, load it into an auto-injector, press it against my skin, push a button, wait five seconds, and remove it. I would never have to see the needle enter my body.
Injection sites had to be rotated between my lower abdomen, upper thighs, and the backs of my arms to prevent skin necrosis. After my first injection, we waited an hour for potential side effects. I was lucky—I didn’t experience flu-like symptoms. Over time, I realized that redness and bruising at the injection sites would be my main side effects.
Searching for the Right Neurologist
Four months later, I returned to Chicago for a follow-up. The appointment lasted only 15 minutes. The doctor told me to continue with Betaseron and return in six months. That was it. I knew then that driving to Chicago twice a year for brief appointments wasn’t sustainable. It was time to find a neurologist closer to home.
After extensive online research, one name kept appearing: Dr. David Mattson. He directed the IU MS Center, a member of the Consortium of MS Centers, and was widely regarded as one of the best in the field. I switched immediately.
Meeting Dr. Mattson
Dr. Mattson was well-known in the MS community. Several people had recommended him to me before I even became his patient. He was kind and knowledgeable, but my first appointment with him mirrored my experience in Chicago: continue Betaseron and return in six months—except with him, it was more like eight months due to his overbooked schedule. He was the best, after all.
Jeremy accompanied me to my last appointment with Dr. Mattson that year to assist with my wheelchair. During the visit, Jeremy asked what could be done about my inability to walk. I was too young to be wheelchair-bound, and physical therapy wasn’t helping. Dr. Mattson simply shrugged, “That’s just the nature of the disease.”
I was livid. I refused to accept that as my future. Hearing him say that ignited a fire in me—I would not let MS dictate my life.
Finding My Own Path
I learned the hard way that the best doctors were often the best because they understood the disease thoroughly—not because they had groundbreaking solutions. They were limited by conventional medicine and often overlooked alternative therapies.
If I wanted to change the course of my disease, I would have to find my own miracle.