Musician with multiple sclerosis sees improvement after clinical trial
Cayce Smith began to experience unexplained numbness and tingling in different parts of his body more than eight years ago. He remembers many repeat office visits to different doctors for his symptoms, like numbness in his feet, or "pins and needles" throughout his arms and hands.
A busy musician, Smith was used to devoting long hours playing multiple instruments, composing music, writing songs, teaching and performing, so he mistakenly assumed that his symptoms were likely due to his taxing schedule.
"I couldn't get any answers," he recalls. "Doctors told me my reflexes were fine and there was literally nothing wrong with me."
Ever frustrated, two years ago Smith suffered a particularly bad episode in which he had difficulty walking, and he ended up at MultiCare Neuroscience & Sleep Medicine in Tacoma.
Neurologist Stacy Donlon, MD, reviewed his MRI results and diagnosed Smith with multiple sclerosis, or MS.
"It's not uncommon for patients to experience a long period of unexplained symptoms as Cayce did," explains Dr. Donlon. "A multiple sclerosis diagnosis is usually confirmed by advanced imaging like an MRI, where we can detect the distinct brain lesions that are seen in patients with MS."
What Is multiple sclerosis?
Affecting over two million people worldwide, multiple sclerosis is considered a progressive autoimmune disease, which means the body's immune system attacks its own tissues.
With MS, the person's immune system destroys the protective coating on nerve cells called myelin, causing damage to nerves in the brain and spinal cord. Common symptoms include numbness, muscle stiffness, vision problems, body pain, dizziness, fatigue and difficulties with walking and hand function.
"As shocked as I was to hear I had MS, it was almost a relief to finally know what was wrong with me," Smith says.
At the same appointment, he met with Tonya Stigger, the research study coordinator for the MultiCare Institute for Research & Innovation, to learn about a possible clinical trial.
Smith became part of a study involving a drug that is currently being tested and evaluated in newly diagnosed patients in more than 200 study centers across the globe.
Cutting-edge research provides hope for the future
Smith says he immediately volunteered to participate in the clinical trial. He receives an infusion of the drug every six months and will continue with his course of treatment into the next year.
Although there is no known cure for multiple sclerosis, this trial is showing promising results by both slowing down the progression of the disease and decreasing the severity of the symptoms. The drug creates a hostile environment for more multiple sclerosis lesions to form.
"As a hard-working musician, I had gotten used to feeling pretty lousy every day,” Smith says. “I’ve already seen a drastic improvement in my day-to-day living and recovery time."
Smith is hopeful about the future of treatment for multiple sclerosis and feels fortunate to be part of this important research study.
"I hope my experience in this research trial will eventually benefit other people who are diagnosed with MS," he says. "That's how things get figured out."
If you are interested in clinical trials at the MultiCare Institute for Research & Innovation, see a list of current trials.
About The Author
Freelance writer Jean Hanavan Kelly has a Master of Science in Health Communications and a background in promoting health literacy to help people navigate our ever-changing, increasingly complex health care environment. More stories by this author