May 5, 2010

Living with MS

My race to beat this disease is measured in big hopes and tiny steps

By Michael Suddath, D85

I noticed something was not quite right in spring 1998, while I was training for the Marine Corps Marathon. Nothing alarming—an occasional stumble, a loss of balance, which I attributed to a lack of physical conditioning.

I’d always wanted to see if I could run 26.2 miles. The Marine Corps course, in Washington, D.C., is fairly flat, good for a first-time marathoner, and I thought the training would help me work off the stress of managing my growing general dentistry practice. I’d also decided to use my big-run debut to raise money for the Whitman-Walker Clinic, which provides medical services and support for the AIDS community of Greater Washington.

“However difficult, we needed to move beyond the diagnosis and focus on how to treat this disease,” says Michael Suddath. Illustration by Chris Silas Neal

I finished the marathon that fall, in five hours and 50 minutes, and started training for the 1999 race the following spring. But my physical awkwardness persisted. Sometimes I would miss a curb, and my gait just wasn’t the same. Ultimately, I had to choose between running and caring for my patients full-time.

Finally in 2001, nearly three years after those less-than-alarming symptoms first appeared, my partner, Dennis Bourgault, urged me to see a doctor. By then, just walking longer distances was exhausting if I didn’t stop and rest. My brother, a cardiologist, convinced me to see one of his medical school classmates, a neurologist, who ordered an MRI and a spinal tap. After three years of not knowing, I decided I couldn’t wait a week until my next appointment for the test results. I asked the radiologist to fax the report to my office.

These five words I will never forget: “demyelination consistent with multiple sclerosis.” The nerve cells in my brain and spinal cord weren’t communicating properly because my own body was destroying the fatty myelin that protects those nerve fibers.

Where did that come from? No one in my family had MS, an autoimmune disease. How could this be? Somehow I managed to suppress the dread that throbbed in my gut, and get through the rest of the day’s appointments. At home, I shared the news with Dennis. Together we decided that however difficult, we needed to move beyond the diagnosis and focus on how to treat this disease. I was about to embark on a different kind of marathon, along a circuitous course that would cross an ocean and many time zones.

I have what is known as primary progressive MS, which affects about 15 percent of the 400,000 Americans who are living with this disease. What that means is that the primary symptom, loss of the use of the legs, progresses over time. And even though science is working to solve this riddle, there is no cure.

Over the next three years, I was prescribed an array of the standard medications used to manage MS: first Solu-Medrol, a corticosteroid, and then the immune-modulating drugs Betaseron, an interferon, and Copaxone, both of which are supposed to ease the symptoms. Nothing worked. I went to see a neurologist at Vanderbilt University who was using a combination of antibiotics to mitigate the disease. I tried that for a year, but again, no change. And I worried about the side effects of taking so many antibiotics.

I reduced my work schedule to 20 hours a week and hired an associate to help care for my patients. Before my symptoms began, I had been negotiating with another dentist in my office complex to take over his practice when he retired, and I had started construction on a new office. But by 2004, as I was navigating myriad treatment protocols for MS, I had no choice but to sell my practice and retire from dentistry. It was disappointing to have to leave a career I had put so much into, but I was also relieved about not having to manage everything on top of this disease.

Looking for something, anything, that would offer some hope, Dennis and I began to search for alternative treatments. We scoured the Internet and discovered that stem-cells were being used, with some success, to treat a number of neurological diseases, including MS, that did not respond to the standard pharmaceuticals.

But there was one huge obstacle: Although autologous and placental stem-cell transplants were being performed at medical centers throughout the world, such therapies had not undergone the required clinical trials to gain approval in the United States, where stem-cell research has been politically contentious. (New National Institutes of Health guidelines released in July 2009 removed barriers to the responsible use of human embryonic stem-cells in research.) Needless to say, American health insurance covered none of what I was about to do.

My apprehension over pursuing experimental medicine half a world away was assuaged somewhat because I had been in touch with other MS patients who were also looking into stem-cell therapy. I decided to go to the International Center for Cell Therapy & Cancer Immunotherapy in Tel Aviv, Israel, which was founded by Dr. Shimon Slavin, a former stem-cell researcher at Hadassah University Medical Center in Jerusalem.

In June 2009, Dr. Slavin harvested mesenchymal stem-cells from my bone marrow in preparation for an autologous stem cell transplant that just might slow the progression of my disease. The theory is that once the stem-cells are injected into the cerebrospinal fluid, they travel to the damaged nerve tissues and begin to repair them.

I remembered from my basic sciences studies at Tufts that stem cells are pluripotent, meaning they can morph into any type of cell. Why then, I asked Dr. Slavin, can’t the body just recruit stem cells from the marrow to repair the damage? Science hasn’t come up with an answer for that, he said. But when the stem cells are allowed to grow in culture for three months and are then injected back into the spinal fluid, it sometimes helps alleviate the nerve damage caused by MS. But because this treatment is relatively new, Israel has not approved it, either. So Dr. Slavin made arrangements for my procedure to be done in Greece.

My hopes were now focused on a date, September 22, 2009, and a place, Athens General Hospital.

Sightseeing proved a reasonable antidote to the anxiety of not knowing how all of this would turn out. After my bone marrow was harvested in Tel Aviv, Dennis and I drove 30 miles north, to Jerusalem, to tour the Holy Land. Before the stem-cell transplant in Athens, we saw the Acropolis and the temples of Zeus and Athena, as well as the Byzantine Museum and the new Acropolis Museum, a breathtaking glass and concrete building with views of the ancient Parthenon.

The procedure to inject the colony of my mesenchymal stem cells into my spinal fluid was surprisingly anticlimactic, just an overnight hospital stay for monitoring. The doctors in Athens said it would take several months for my stem cells to differentiate into oligodendrocytes—the cells that produce the nerve-insulating fatty myelin that MS destroys—and hopefully slow the damage that had already occurred. In Greek, oligodendrocyte means “cells with a few branches.” I returned to D.C., hopeful those branches would bear fruit.

“Let us run with patience the race that is set before us,” the Book of Hebrews says. Six months have passed since my stem-cell transplant. I’ve noticed some subtle improvements, and I embrace each tiny increment. I take medication to control my muscle spasms, and do physical therapy to maintain my strength. And I remain patient, always patient, awaiting the breakthrough that will lead to a fuller understanding of this disease, and perhaps a cure.

This article first appeared in the Spring 2010 issue of Tufts Dental Medicine magazine.

Michael Suddath, D85, and his partner, Dennis Bourgault, F88, are the owners of Chateau-Animaux, an upscale pet-supply store on historic Barracks Row in Washington, D.C.

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