My Diagnosis Story

Everyone with a chronic health condition or health situation has one: the diagnosis story. In my professional life as a healthcare communications strategist, the diagnosis story is one we talk about a lot – and for good reason, because it’s through these stories that other people can recognize similarities that might help THEM get to a diagnosis. Or someone might find commonalities between one person’s story and theirs and feel comforted.

Since this is a blog about my life with MS, it’s only natural that I’d share my own diagnosis story and all the weird, scary, and ultimately fortunate turns that got me to the most life-changing words I’ve heard: You have relapsing remitting multiple sclerosis.

Let’s take a step back.

I got COVID-19 in April 2022, after a ten-day combo work and personal trip to New Orleans. I figured it was going to happen after a few day-long meetings in a too-small, badly-ventilated conference room and attending some very fun festivities for a family wedding. Despite being vaccinated, I got pretty sick and was in bed for about a week. A weird thing happened after I recovered: I lost hearing in my left ear and developed a nasty bout of vertigo. An audio test at the ENT confirmed that the hearing on my left side was way below the levels on my right side. I was prescribed a round of prednisone (I didn’t know at the time that this would become my first, but certainly not last, massive steroid prescription), and eventually my hearing came back and the vertigo went away – yay!

The ENT wasn’t sure if this could be contributed to COVID, so he recommended I get an MRI to make sure there was nothing more serious going on (similarly to the prednisone, this was to be the first in a long line of MRIs).

I had no idea what to expect when it came to the MRI results, and when the botched telehealth appointment led to the ENT calling my cellphone, he shared two outcomes. The MRI showed that I didn’t have a tumor or anything blocking my ear, but I had abnormal results called demyelination. He told me it is usually an indicator that a person has MS…but this was outside his expertise, so I should talk to a neurologist.

I burst into tears and ran downstairs to recap the conversation with my husband. I frantically started looking up neurologists in Chicago and eventually was able to get an appointment with one, after my therapist suggested I look into RUSH. By complete luck, one doctor had a cancellation and could see me within a few days – which truly was fortunate because many of the doctors had months-long waits.

My husband and I went to the appointment together, and the neurologist could not have been kinder (sometimes, my husband and I laugh because her appointment notes start with, “This is a pleasant 33-year-old female…). She completed a few tests/assessments, listened to my story, and reviewed my MRIs. The conclusion was that I was overall healthy, had recovered from the post-COVID stuff, and there was no evidence to suggest that I had any other kind of episode that would signal MS. She said the activity on my MRI could be post-COVID autoimmune demyelination – but that MS could not be ruled out. The next step was to keep her posted if anything weird happened and schedule another MRI for the future.

We left the appointment a bit stunned, but I felt relieved. I thought, COVID is unpredictable and strange, viruses do crazy things to the body, and overall, I feel fine! All good. I went on living my life, albeit with a small voice reminding me to pay attention to my body more closely.

A few months later, my right hip and lower back were aching constantly. My husband and I had just gotten our condo repainted, and after moving furniture and everything else, I figured I had just overdone it. Then my right leg started feeling really weird – the sensation of the sheets or fabric on my leg felt off. Pretty soon, my right leg was numb. This was just sciatica, right? I must have pinched a nerve while lifting heavy boxes.

Then everything below my belly button was numb, including both of my feet, which were also experiencing strange sensations constantly. Walking was hard and uncomfortable because it felt like my legs were either burning or had been plunged into freezing water, or I couldn’t feel them at all and I didn’t know where I was stepping. We took walks outside and I stumbled over my feet and drifted to one side because my balance was off, too. I remember trying to do yoga in my room and falling over, not once, but many times, until I laid on the mat and started crying. What was happening to me?

It was around that time that I decided to get another MRI scheduled and try to meet with the neurologist again. She did say to reach out if anything was weird…At first, the earliest appointment I could get was not for four months, but when I told her what I was experiencing, she moved some things around to see me two days after my MRI. That was an indication that this was more serious than a pinched nerve.

I think anyone with MS will tell you they remember their diagnosis day. I certainly do, but it is an endpoint to what I started to think of later as Hell Week.

I had MRIs on a Monday and a follow-up with the neuro on Wednesday. This time, it was clear this was not just post-COVID autoimmune demyelination, because my MRIs showed lesions and activity. She was pretty positive it was MS, but she suggested I try to make an appointment with an MS specialist to confirm the diagnosis.

In another truly remarkable bit of luck, the doctor she recommended at RUSH had a cancellation and I was able to see him that Friday. I just had to get through one more day of unknowing. I definitely did not sleep the night before (or any night that week, for that matter).

At that appointment, he confirmed it: between the MRI results and my physical symptoms, I was having an episode of thoracic spine myelitis, a common type of MS episode. He confirmed that the diagnosis was relapsing remitting MS.

That was on Friday, April 7, 2023.

The first day of a new life.