Medication helps multiple sclerosis patient live symptom-free

Chicago South Side native Michelle Tucker said her symptoms came on suddenly: fatigue, blurred vision and numbness in a hand and leg. Maybe it was allergies—or maybe a rough night’s sleep, she thought. Her vision came and went, but the numbness wouldn’t subside.

“I really knew something was wrong when I was driving and couldn’t tell what color a stoplight was,” she said.

An eye doctor referred her to her primary care doctor at an outside organization, who then ordered an MRI to scan the brain for areas of injury. The results arrived quickly: multiple sclerosis.

The autoimmune disease, commonly known as MS, affects the brain, spinal cord and optic nerve. The body’s immune system, which is designed to protect it from infections, ends up attacking the protective coating of nerves and causes them to become inflamed. Blurry vision from MS, for example, is caused by an inflamed optic nerve.

While MS symptoms can appear in anyone at any age, women are more than twice as likely as men to be affected. And the majority of people with an MS diagnosis begin to experience symptoms between the ages of 20 and 40.

Tucker, now 47, was first symptomatic at age 31.

Doctors put her on steroids, which is a first-line treatment for many MS patients. These medications tend to close the injured blood-brain barrier — a system of blood vessels and tissue that prevents harmful material from reaching the brain.

“It didn’t really sink in that I had MS until that first treatment of steroids,” Tucker said. “This was a new marriage for me. ’Til death do us part.”

The diagnosis was familiar. Tucker’s aunt was misdiagnosed with cluster strokes for decades before receiving an MS diagnosis in the early 2000s.

Tucker threw herself into researching everything she could about the disease.

“I stressed myself out so much researching what I should avoid,” she said. “I didn’t realize stress is actually a big trigger.”

Two weeks after her diagnosis, Tucker relapsed: her left leg went numb, and she fell to the ground.

Her fatigue was overwhelming, but she managed to start drinking more water while also exercising more and eating healthier food. Still, her symptoms persisted.

While no cure currently exists for MS, some people have few or no symptoms with treatment. Some also experience fewer symptoms as they age and the body’s immune system slows down.

“Everybody’s MS behaves a little bit differently,” said Daniel Kurz Jr., MD, Assistant Professor of Neurology at UChicago Medicine. “Although we don’t have a cure now, we’re looking toward medications that have been developed to help reduce risk of disability.”

Neurological disability from MS can impact speech, cognitive function, eyesight, bladder control, sexual function, muscle movements, pain, numbness, sensory abilities, mood and more. Many people with MS also benefit from mental health treatment as they adjust to various challenges.

Though medications can help with symptoms, they can also come with their own host of side effects.

Everybody’s MS behaves a little bit differently. Although we don’t have a cure now, we’re looking toward medications that have been developed to help reduce risk of disability.

Steroids affected both Tucker’s physical and emotional well-being. She had intense hunger pangs and could feel exhilarated one minute and angry the next. Her mom, a retired nurse, would help inject the steroids into her stomach. The injection site quickly turned into a patchwork of black and blue bruising.

“Injection sites can become sensitive over time,” said Kurz. “For a while, injectables were one of the only options doctors had to treat MS symptoms. We don’t yet have a way to find out which medication is best, so we end up talking about the risks and benefits of each medication with our patients.”

Tucker tried medication after medication but continued to experience symptoms.

“I had a lot of fatigue, alternating numbness, and I had a butterfly feeling down my spine,” she said. “I would be so tired, I would find myself skipping lunch to take a nap. I could only wear sneakers or hard-bottomed shoes to keep my balance.”

One medication made her lose all her hair.

In January 2022, she decided to switch doctors and turned to UChicago Medicine, seeing Kurz for the first time.

“We made a shared decision for Michelle to go on an infusion medication called Tysabri,” said Kurz. “It works to limit the movement of potentially harmful immune cells across the blood-brain barrier into the brain and spine itself. For Michelle, Tysabri has had a reduced number of side effects compared to other MS medications.”

Having been on the medication for well over a year, Tucker said she is more relaxed, has a better appetite, and doesn’t experience numbness or vision issues anymore.

She receives an infusion of the immunosuppressive medication once per month and is monitored with MRI scans to help ensure the medication is working. If she remains clinically stable into the future, Kurz said they’ll discuss potentially tapering down from the medication since the body’s immune system slows down with age, lowering the risk of an MS relapse.

As an office manager at a cybersecurity company and a wife and mother, Tucker has been able to lead a more comfortable life with her new care team and medication regimen.

She said people with new diagnoses should try to remain patient as they’re introduced to a whirlwind of new information.

“Don’t be afraid to talk to your doctor about anything you’re experiencing,” she said. “They’ve seen it all.”