Before my optic neuritis and MS diagnoses, I faced the unknown

Desiree Lama graduates from the University of Texas at Austin. (Photos courtesy of Desiree Lama)

Day 24 of 31

This is Desiree Lama’s story:

My journey with relapsing-remitting multiple sclerosis (RRMS) began when I was only 14 years old. I can vividly recall the smells, sights (or lack thereof), and sounds of my first MS episode. I was sitting in the back row of my entry-level biology course as a high school freshman when the vision in my left eye became fuzzy. My first thought was that there had to be a piece of hair or lint in my eye. Yet, to my surprise, it was much more serious. Acknowledging my dramatic side, I understand why my family didn’t believe that my vision went fuzzy. I have a long history of being the little boy who cried wolf.

Lama, center, participates in the 2023 MS walk in San Antonio, Texas. From left, she’s joined by her dad, brother, friend, mom, aunt, and uncle.

I call the next phase the period of the unknown because I received a series of “I can’t diagnose you because I don’t know what’s causing your symptoms” responses. During this period, I was probably the most depressed and scared I’ve ever been in my life.

As the days went on, I continued to lose vision in my left eye. I saw doctor after doctor, specialist after specialist, and eventually found myself in a neuro-ophthalmologist’s office awaiting even more vision exams. It was this doctor who was able to diagnose me with optic neuritis, which occurs when the optic nerve is inflamed, causing eye movement pain and temporary vision loss. My case was (mostly) resolved with a high dosage of steroid medication. After diagnosing me, the neuro-ophthalmologist said I could have another episode of vision loss somewhere down the line. The waiting game began.

Lama sits outside of the Dallas World Aquarium.

It was the fall semester of my senior year of high school when I lost vision in my left eye for the second time. Bad timing! I immediately returned to the same neuro-ophthalmologist, where I was prescribed the same dosage of steroid medication. At this point I was told that I might have MS, but would need to be referred to an MS specialist for confirmation.

It was confirmed.

My diagnosis has set the trajectory for every decision I have made since. Seven years later, I’m now a PhD student at the University of Texas at Austin studying educational psychology with a specialization in human development, culture, and learning sciences. MS may be winning the battles, but I will win the war.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.