When I was diagnosed with multiple sclerosis (MS) in October 2000, I was only 26 years old. I had played football in college. I’d been active. I kept thinking, Now this. I was married but had no children at that point, and I wondered—with MS—what would my life have in store for me?
In a few years, the doctors I was seeing—even though they were neurologists—said they couldn’t do anymore for me than what they were already doing. One of the doctors put three medications in front of me and said, “This is what’s available for MS now. Choose one.” That’s how they approached the problem.
And that’s when I thought, I’m going to the University of Michigan.
Michigan’s MS clinic
I was seen in the Michigan Multiple Sclerosis Clinic and they seemed to find a better medication rather rapidly. My illness was controlled for a number of years.
But, of course, MS is a progressive, degenerative disease. As the years wore on, I became less mobile and went from a cane to a walker. By 2011, I was in a power scooter most of the time.
That’s when my physician, Dr. Benjamin Segal, director of the U-M Multiple Sclerosis Clinic, decided to do something “out of the box” to help me. He knew that I was very concerned about keeping up with my children because my wife and I had two daughters, who are now 8 and 9. I wanted to be active and be able to do things with them.
A new treatment for MS
Dr. Segal worked with a physician from U-M’s Bone Marrow Transplant Program, which uses extracorporeal photopheresis (ECP) to fight graft vs. host disease. ECP is a simple painless procedure that involves a transfusion of your own blood. Dr. Segal thought that because graft vs. host is essentially an inflammatory disorder, ECP could possibly work in treating MS as well.
I was willing to try it. And, besides, I figured if it didn’t help me, it could help someone else.
The treatment worked!
After ECP treatment, I’m now walking with a cane. I can even walk without the cane for short distances. I also regained fine motor skills in my left hand.
The first thing I noticed is that I could stand up and look at the sky and not fall backwards. Balance had been my big problem.
My family and I are beyond thrilled.
And I have advice for healthcare professionals: Don’t be afraid to use an already existing treatment for other conditions. It worked for me. I’m sure it will work again.
ECP Clinical Trial is open
Patients with secondary progressive MS not currently treated with disease-modifying therapies may be eligible for Dr. Benjamin Segal’s ECP trial. Trial candidates should have experienced disability accumulation over the past 1-2 years. Please contact Amanda Rasnake, clinical trial coordinator, at (734) 232-2452 for more information.
- Find out more about the Neurosciences at the University of Michigan Health System.
The University of Michigan’s multidisciplinary neuroscience team is made up of more than 70 nationally recognized neurologists and neurosurgeons. Leading the way in brain, spine and nervous system care for close to 100 years, patients have access to services that can be found at only a handful of places as well as cutting-edge treatments with the latest research. Neurology and Neurosurgery at the University of Michigan Health System have been recognized by U.S. News & World Report numerous times for excellence in patient care.