An 18 Year Journey with Relapsing-Remitting MS
"I was diagnosed with relapsing-remitting multiple sclerosis when I was seventeen," Jenni Cusumano said. "As a 35-year-old woman who's lived with MS for over half my life, I don't remember what life was like before my diagnosis."
Multiple sclerosis (MS) is an auto-immune disease in which the immune system attacks the coating of nerves called "myelin" in the brain and spinal cord. The damage to the myelin and nerve fibers interferes with nerves sending signals between the brain and spinal cord and other parts of the body. This leads to attacks or relapses of neurological symptoms, such as vision problems, numbness, weakness, imbalance and fatigue.
Relapsing-remitting multiple sclerosis (RRMS) is the most common type of MS with flare-ups or relapses of neurologic function, followed by partial or complete remissions/recovery periods. While there is no cure for MS, there are treatments that can reduce these attacks and slow the progression of the disease.
Onset of Symptoms
During the summer of 2001, when she was 14, Jenni was in a car accident with her parents. Afterward, she noticed a tingling around her tailbone at the base of her spine and chalked it up to being in an accident. "I went to physical therapy, which seemed to help."
A year later, during her sophomore year, Jenni woke up, looked at the TV across the room and realized she had double vision. Unsure about the cause, Jenni and her mom visited an eye doctor. "The doctor suggested that retinal migraines in the eyes can cause vision problems," Jenni said. "We didn't question the diagnosis, and my symptoms went away with my eyesight returning to normal."
When she was a junior in high school, Jenni noticed a tingling sensation in her feet as she walked through the mall to her new retail job. "I thought the feeling was caused by walking in new high-heeled shoes. However, over the next few months, the numbness and tingling slowly crept up my legs to my waist."
Her mom was concerned and made an appointment for Jenni with a pediatric neurologist for evaluation. During her appointment, Jenni had an MRI scan.
Barry Singer, MD, BJC Medical Group neurologist and director of The MS Center for Innovations in Care at Missouri Baptist Medical Center, explained that MRIs are an important tool for diagnosing, monitoring and treating MS. "MRI imaging can show lesions, or areas of nerve damage and inflammation, in the brain and spinal cord. After diagnosis, we use it to track how someone's MS changes over time and to make sure that treatment is working."
An MS Diagnosis
After her test results were back, Jenni and her parents met with the neurologist who told them that Jenni had RRMS. "My immediate reaction was surprise. When you're seventeen, you think you are invincible."
Jenni started MS therapy to treat her symptoms and the disease. "The first medication was a once-a-week injection," she said. "After a year, I had a breakthrough episode of the disease, which meant the medication wasn't working for me. I changed therapies before leaving for my first year at Mizzou."
Jenni admitted that she has feared needles since she was young. "With the new medication, I gave myself shots every other day, three times a week," Jenni explained. "I dreaded every injection, even though the needle was small and the subcutaneous injection went just under my skin."
Jenni added that she didn't like the side effects of the new medication and confessed that she stopped taking it for about a year.
Experiencing Relapse & Recovery
One evening while out with a friend, Jenni felt like she had something in her left eye. "We couldn't find anything in my eye, but over a week, my vision worsened," she said.
Jenni returned to St. Louis to see her neurologist, who told her she had an MS flare-up and prescribed a five-day course of IV steroids to reduce the inflammation.
After the steroid therapy, Jenni recovered full vision in her left eye over the next week. "However, because I was non-compliant and had stopped giving myself the injections to control my MS, scar tissue had developed in my eyes," she said, explaining that she's been diagnosed with optic nerve disorder.
The optic nerve is located at the back of the eye and carries visual messages to the brain. In MS, the body's immune cells attack the protective covering surrounding the optic nerve, which can lead to damage and vision problems like Jenni experienced.
Before she returned to Mizzou, Jenni was prescribed a new medication that she could take by mouth. "I was on this medication for six years, felt wonderful, and didn't have any MS flare-ups."
Finding MS Help at MoBap
In July 2017, Jenni had a breakthrough of the disease shown on her MRI and needed to switch treatments to help control her MS better. When changing treatment medications, a "washout period" gives the body time to rid itself of one drug before safely beginning another.
"During my 'washout period,' my neurologist left the practice, and I had to find a new doctor," Jenni said "I remembered hearing Dr. Singer speak at an event and how impressed I was with his scope of knowledge about MS. I called his office at Missouri Baptist Medical Center, explained my symptoms, and they got me in right away."
When Jenni visited Dr. Singer, she was experiencing dizziness, blurry vision, hearing problems, and difficulty walking. "I felt like I had the full spectrum of MS symptoms, and there wasn't anything I could do to prevent or stop them. I was scared," she said. "During my first appointment, Dr. Singer spent time talking to me. He was caring and gave me hope."
Dr. Singer explained that The MS Center for Innovations in Care focuses on comprehensive care for patients with multiple sclerosis. "Patients have access to neurologists, a physician assistant and a full nursing support team that includes a nurse navigator to help answer questions and connect patients to resources. We also coordinate care with other MoBap specialists to help patients manage the disease and the symptoms it can cause."
"At MoBap, I feel like I have an entire care team helping me." – Jenni Cusumano
Treatment in MoBap's MS Infusion Center
During her first visit, Dr. Singer scheduled Jenni for an MRI to check disease activity and progression. "The MRI showed that I had over 30 new – and active – lesions in my brain."
As part of her treatment regimen, Dr. Singer started Jenni on a new medication given through an IV in MoBap's MS Infusion Center.
Registered nurse and MS Infusion Center team leader Julie Mangiaracino said that one of the biggest benefits of the MS Infusion Center is that it's next door to The MS Center for Innovations in Care and the doctors who care for patients with MS. "It makes coordinating care easy, especially if patients have limited mobility or travel from outside the St. Louis area to get treatment."
Julie added that the Infusion Center received a top award for 100% patient satisfaction in 2022. "MS affects each patient differently, and we understand the challenges our patients face. We are here to answer questions and be a resource."
One of Jenni's favorite aspects about MoBap's MS Infusion Center is that it caters to patients with multiple sclerosis. "I love Julie and Kara, the nurses at the Infusion Center. They are caring, and because I see them every month, we've become friends. MS is a big part of my life, and they understand the disease and what I go through," Jenni said.
She added that she always feels comfortable when she goes in for her infusions and never feels embarrassed or defeated. "I've also met some amazing people with MS at the Infusion Center, and we exchange stories and share experiences. It's a special community that I feel honored to be a member of."
Jenni also appreciates the variety of supportive services she can get through MoBap, including nutritional counseling, as well as physical, occupational, and speech therapy. "I'm happy that MoBap offers other services if I need them."
Looking to the Future
Since starting her new medication, Jenni's follow-up MRI has shown significant improvement, with many of the new lesions shrinking in size and others disappearing. Her most common flare-up is blurry vision or light sensitivity in her eyes, caused by her optic nerve disorder. "Currently, I'm in remission, and the symptoms I experienced during my relapse have gone away."
Looking back at everything she's experienced with MS, Jenni says she focuses on staying positive and managing her stress, which can help keep flare-ups at bay. "I find that keeping my life in good balance and having a positive attitude really helps. I don't let MS get me down and there's a lot I can accomplish."
In October 2021, she married Chris, her boyfriend of seven years, and became a stepmom to his 13-year-old son Nick. "We also welcomed our newest family member, Rocky, a German/Australian Shepard puppy who keeps us and our two kitties on our toes. Life right now is really good."
Missouri Baptist's MS Infusion Center
Located on Missouri Baptist's main campus, the MS Infusion Center is next door to The MS Center for Innovations in Care and the doctors who care for patients with multiple sclerosis. The Infusion Center is the only one in the region dedicated to patients with multiple sclerosis. Staffed by highly-skilled, compassionate nurses who oversee patient infusions, the Infusion Center focuses on patient comfort. The Center has large windows that let in natural light, reclining chairs and televisions. If a patient wants privacy, a curtain can be pulled around their space.
For more information about the MS Infusion Center, visit MissouriBaptist.org/MSCare.