When Monica Redmond found out she had multiple sclerosis (MS), it was one of the hardest things she’d ever had to hear. Monica was only familiar with celebrities who were disabled from the condition. She worried about how the disease would affect her day-to-day life and her future.
Like Monica, many people don’t realize how common MS is. According to the National Multiple Sclerosis Society, nearly 1 million Americans (approximately 1 in 350 people) are living with MS. However, many patients who are mildly impacted may choose not to share their diagnosis with others.
After a period of denial, Monica consulted an Atrium Health neurologist who opened her eyes to her condition and got her on the path to healing. Twenty-seven years later, Monica feels great and serves as the executive pastor at St. Paul Baptist Church in Charlotte. She’s active in preaching, counseling and working with the community to help those less fortunate work to overcome eviction and loss of utilities.
“I’m thankful to be able to tell my story,” Monica says. “This is a lived testimony that helps people find hope.”
Throughout Monica’s health journey, the neurology team at Atrium Health Multiple Sclerosis & Autoimmune Neurology Center has remained by her side, helping her navigate several treatments as they worked to bring her condition under control.
Early symptoms and diagnosis
Monica first noticed MS symptoms when she was 16. Her right hand would tremble, but her parents thought it was a nervous twitch. Eventually, Monica developed additional symptoms, including numbness in her fingertips and the bottoms of her feet. She also had numbness in the entire right side of her body. She consulted various doctors for several years, seeking an accurate diagnosis. But her symptoms kept getting worse.
During summer 1997, Monica saw a doctor at a multispecialty medical clinic who referred her to a neurologist. The neurologist ordered an MRI, which led to her MS diagnosis in September. The news of her diagnosis was especially difficult since she had started her dream job as a youth pastor in February of that year.
“It was alarming and scary,” Monica says. “It was not the life I thought I would live.”
Since Monica struggled to accept her diagnosis, she refused to take the medication prescribed by the neurologist. Her symptoms continued to get worse. Monica connected with a mentor and shared her symptoms and medical history. Her mentor convinced her that she needed to start taking her medication as prescribed to start feeling better.
The power of a second opinion
Another friend of Monica’s, who was a nurse, suggested she get a second opinion. Her friend recommended Dr. Michael Kauffman, a neurologist formerly with Atrium Health Neurosciences Institute. Kauffman started the first MS Center in Charlotte at Atrium Health.
When Monica saw Kauffman for the first time in 2008, she was impressed by his knowledge of MS and all the questions he asked. He asked about her bladder issues, which she didn’t realize were related to MS.
Kauffman took the time to show Monica images from her MRI. He put them on the X-ray board and pointed out the lesions on her brain. He also spoke in a language she understood, explaining complex medical terms to help her understand her condition. These steps helped make her feel part of the medical process.
“Getting a second opinion was important for me,” explains Monica. “I needed answers. It helped reinforce the diagnosis and the need to be on treatment.”
Kauffman recommended a series of medications for Monica to try. Since she was struggling to get her MS under control, he prescribed a chemotherapy drug. Monica worried about possible side effects, including hair loss.
Kauffman brought in another MS patient who was on the same type of drug he prescribed for Monica.
“This man looked like a buff football player – he was so big and strong,” says Monica. “And he didn’t lose his hair. That convinced me I could take it and be OK. It really helped me to meet with other patients who were willing to share their experiences.”
Meeting the GOAT
After Kauffman retired in 2013, Monica began seeing Dr. Donna Graves, specialty medical director and chair of neurology at Atrium Health Neurosciences Institute.
“Dr. Graves is personable and treats you like an individual,” Monica notes. “Your case matters to her and her team. When I call her office, I know I’ll get an answer that makes me feel important.”
Graves and her team used medication to keep Monica’s MS under control for several years.
“Dr. Graves takes the time to involve me in my care and makes me feel as if I’m her only patient,” Monica explains. “She wouldn’t give up until she discovered the answer to my problem. That’s why she’s the GOAT (greatest of all time).”
Overcoming severe relapses
Beginning in spring 2020, Monica faced a series of MS relapses. She lost her preaching voice and felt silenced. She also had swallowing issues and difficulty writing. Monica attributes the stress of the pandemic as a significant trigger.
Monica was in the hospital for three different stays over several months. On the first visit to Atrium Health University City Emergency Department, an MRI revealed she had a lesion on her brain stem. According to Graves, a new lesion on the MRI indicates new inflammation. Lesions within the brain stem can be more dangerous and tend to cause more severe symptoms, including speech issues.
Hospital staff treated her with a high-dose steroid to help shrink the lesion. After five days, she was released and sent home. A week later, her slurred speech got worse. So she returned to the hospital.
During her second hospital stay, Monica’s doctor called Graves to coordinate her care. They decided to move Monica to Atrium Health Carolinas Medical Center. They started her on an immunosuppressant drug that brought her some relief. After a week, she returned home.
Over the next month, Monica experienced a third relapse and was readmitted to the hospital with worsening symptoms. Her speech was severely slurred and she struggled with her movements. Graves ordered an MRI, which revealed that the original lesion on her brain stem had grown and a new lesion had formed in the same area.
Graves did a medical workup to look for other possible issues. The hospital treated Monica with steroids and plasmapheresis (a blood plasma treatment). While Monica saw some improvement, she still had significant problems with her speech.
“For Monica, her work as a pastor is her joy and passion,” says Graves. “So slurred speech was an especially devastating symptom, making it impossible for her to return to work.”
Graves gave Monica another course of high-dose steroids and treated her with a chemotherapy drug. The medication helped her recover her speech. Monica’s speech improved dramatically with months of speech therapy. She also had physical and occupational therapy each week. It took her several months to feel ready to return to public speaking.
Graves recommended a new immunosuppressive MS treatment for Monica to try. Unfortunately, it didn’t work for her.
“This is what truly impressed me about Dr. Graves and her team,” Monica says. “If a medication didn’t work, they kept searching. They were determined to find a drug that would help me.”
A new diagnosis
Since Monica had been stable for many years, Graves found the series of aggressive relapses unsettling. Plus, the significant size of the brain stem lesions was concerning.
In September 2020, Graves took a fresh approach to Monica’s case and opted to run additional tests to see if something had caused her recurrent relapses. After running some tests, Graves discovered that Monica was positive for myelin oligodendrocyte glycoprotein (MOG) antibodies. MOG antibody disease is a rare autoimmune condition that displays symptoms similar to those of MS. According to Graves, autoimmune diseases that affect the central nervous system have symptoms that can overlap, making diagnosis challenging in some cases.
“That’s why it’s so important to see a specialist,” explains Graves. “Many patients with these conditions have complicated cases, and there are many factors to consider when developing a diagnosis and management plan.”
Graves prescribed a broader immune suppressant maintenance drug that would cover both MOG antibody disease and MS.
“Dr. Graves called me personally to talk about my new condition and the maintenance drug she found,” notes Monica. “No doctor had ever called me before, but Dr. Graves did because it was important to her to figure out what was going on with me.”
After starting the new drug and completing her speech, physical and occupational therapy, Monica was able to return to work in January 2021.
Care coordination and advocacy
Helping MS patients like Monica requires extensive coordination. For example, while Monica was in the hospital, Graves contacted hospital staff and helped guide her therapies. The nursing staff at Atrium Health Multiple Sclerosis & Autoimmune Neurology Center stays in contact with patients while they’re in the hospital and as they are released. Coordination was also required to arrange for speech, physical and occupational therapy to support Monica’s recovery at home.
The MS Center has a multidisciplinary team of experts to support patients with autoimmune diseases. These experts include MS-certified nurses, specialty pharmacists, infusion specialists and allied health and research team members. In addition, the MS Center can coordinate care for their patients by collaborating with many experts, including those from neuro-ophthalmology, neuro-urology, behavioral health and physical medicine and rehabilitation.
Advocacy plays a vital role in managing MS in two ways:
- Patients advocating for themselves. Patients should be vocal about their treatment and health care goals. Given the potential side effects, some patients may want to be more or less aggressive with therapies. Many of the symptoms of MS are not physical and include fatigue, cognitive problems and depression. Since these symptoms may not be obvious to a doctor, patients should be open about them.
- Doctors advocating for patients. Doctors should help MS patients get access to supportive resources. For example, nurse navigators help provide education, support and coordination of care during times of need. The MS Center advocates for patients by partnering with the National Multiple Sclerosis Society and providing support at the state and national levels.
The benefits of positivity and healthy living
Monica has an infusion of antibody therapy every six months. She also maintains a healthy diet and stays mentally and physically active. Her MS is well controlled with minimal day-to-day symptoms.
“Anytime I get to work from my office, I’m doing ok,” Monica explains. “My life is moving forward with medication and prayer. My relationships are also important. I’m so thankful for my doctors, friends, coworkers and family. And I’m thankful for God and my church.”
Monica’s positive attitude has made a huge difference in her long-term health.
“Her motivation and drive helped her to get better,” Graves says. “Monica is an inspiration to me in the way she uses her dynamic personality and positive attitude toward her experience to encourage others.”
MS patients with a negative attitude tend to experience extended periods of denial, miss treatments and give up hope. The abundance of misinformation about MS makes many patients fear long-term disabilities and focus on a bleak future. However, MS can look very different from patient to patient, causing either mild or aggressive disease.
“Most patients who go on an effective therapy do very well,” Graves says. “Our first treatment for MS was approved in 1993. But over the past decade, we’ve had access to higher-efficacy therapies that give patients more choices and better outcomes.”
“Live your life, and don’t let your diagnosis define you,” Graves emphasizes. “MS is a chronic condition, but we can deal with it. Stay focused on your goals – and we’ll help you reach them.”
Learn more about the MS & Autoimmune Neurology program at Atrium Health at AtriumHealth.org/MSCenter.
