My MS Story – Jonathan Urra

David MelendezSpotlight

On January 24th, 2020, Honors College Alum Jonathan Urra checked in to the hospital after feeling numbness in his toe that spread to his left hand and other random parts of his body. After going through a CT, MRI, spinal tap, and endless blood work within a few hours of being admitted, everyone was left speechless by the results. Doctors had found over 30 active and enhancing lesions in the MRI of a young and healthy 28-year-old man.

“I visited the emergency department as I knew something was extremely off, only to be dismissed because I seemed young and healthy. The doctor told me to go home and relax because it may be due to a jiu-jitsu injury or stress”, says Urra. During a skiing trip afterward, Jonathan noticed a loss of balance while trying to stop or slow down which he found strange since he had no issues skiing before. “I was just dismissed from the emergency room less than a week before, and my symptoms worsened, so I scheduled a neurologist appointment”. His physical exam results showed no deficits, but he knew something was wrong and became irritated with being sent home without any diagnosis.

Jonathan began to feel many different symptoms as his body worsened every day. Finally, after receiving a CT scan more than a week after his initial ER visit, Jonathan was told the news that would be forever etched in his memory. Doctors informed him that his brain CT results came back abnormal and rushed to conduct an MRI scan. “When the neurologist came to my hospital room with the MRI results, I asked him not to sugarcoat any news he may have”, says Urra. The news was that his results were not good at all and that Jonathan would need a spinal tap immediately. 

After initially ruling out MS due to the spinal tap results, doctors continued measuring Jonathan’s vitals and drawing blood a few times daily. The urgency throughout the hospital was evident as doctors worked diligently to find answers. “I had over ten specialists analyzing all my results, with every testing coming back negative!”. Jonathan then received a biopsy via craniotomy to get to the bottom of things quicker. Jonathan’s stress levels were at an all-time high in the weeks after his brain surgery. A flare-up that reactivated numbness in his feet made Jonathan restless, and the high-dose oral steroids did little to no improvement on his symptoms. 

After seeing a neuro specialist, Jonathan Urra was finally officially diagnosed with Multiple Sclerosis in July 2020. After the diagnosis, Jonathan felt a sense of both relief and grief. Relief because there was finally something to treat. The differential diagnosis included cancer, neurocysticercosis (tapeworm), NMO, ADEM, MS, and beyond. Jonathan was on an emotional rollercoaster for over six months while the doctors eliminated options from a list of potential diagnoses. Grief also set in for Jonathan as he realized this would be the new normal for his life. Jonathan started his treatment in August 2020.

Today, Jonathan Urra has adjusted to life with MS. He receives regular infusion treatments every 6-9 months. He is part of a research study with UM that compares the progression of newly diagnosed MS patients, one group being on aggressive treatment (like the one he’s on, Ocrevus) and less aggressive treatment. Records are kept of his deep physical and cognitive exams while providing an EDSS score which measures the disability of an MS patient from 0-10. Jonathan has also opted-in to draw blood so doctors can link possible biomarkers to MS, to help avoid the maze of exams and misdiagnosis. 

Jonathan is also a member of the National MS Society Miami Community Council, advocating for those that can’t. His social media focused on spreading awareness and practical knowledge on dealing with this disease and best practices. He wants to give hope to people who may not have any left, as he felt he was at the beginning of it all. 

“I’ve been on a mission to spread orange for MS along with my committee partner and fellow MS warrior, Milagros Delgado. We’ve received endless support from major businesses and organizations who’ve joined the cause. The names of the individuals that helped make this a reality are too many to name within these organizations that have lit orange during MS Awareness Week (3/12-3/18) and thanks to them – the FIU Honors College, Miami Dade Arena (where the HEAT play), the Phillip and Patricia Frost Museum of Science, MDC National Landmark Miami Freedom Tower, Commissioner Kristen Rosen Gonzalez of Miami Beach City Hall, MBFD HQ, MBPD HQ, the Florida State Historic Capital Museum, and beyond.”

Jonathan did not know what MS was until being diagnosed. Most people are unaware unless they or someone they love is directly affected. Spreading awareness about MS can help others get diagnosed sooner so they can get on life-changing treatment before they lose a quality of life they may never experience again.