When Doctors and Nurses Become Patients.

12 health-care professionals with MS shared their experiences with diagnosis, denial, and early-treatment decisions at a conference last year.

AT AGE 33, Dr. Mark Levinson was on top of his world. The long, hard hours of medical school were behind him. His practice was doing well. He was a cardiologist, and dozens of people he passed every day on the streets of Jonesboro, Arkansas owed their lives to him.

Then one day, his world fell apart. The cause of the fatigue, loss of muscle control, and dizziness he'd increasingly been experiencing was finally diagnosed. Dr. Levinson had multiple sclerosis.

"This disease knows how to attack you," Dr. Levinson said. "It hits the things you hold dear. How can you be an interventional cardiologist when you can't manipulate the catheters in your hands?"

Coming to grips with the limitations of MS, and finding the courage and tools to succeed in spite of it, were discussed by a dozen health-care professionals in April 1999 at the Shared Perspectives Conference, sponsored by Teva Marion Partners (makers of Copaxone). Six nurses and six doctors from around the country convened in southern Missouri for the 4-day event. Though they represented diverse disciplines within the health-care field, every participant had MS, giving them a dual perspective as health-care professionals and patients.

Diagnosis MS

Several participants took note of what many others with MS have said for years: The early symptoms of the disease are sometimes dismissed by health-care providers as inconclusive and somehow insignificant, but the severity of those symptoms can be overwhelming for the patient.

"MS is such a serious disease. As a doctor, you want to be absolutely sure of the diagnosis," said Dr. Donna Whitney, a neurologist from Nashville, Tennessee. "But that can be a problem if you're looking for absolute textbook certainty before letting your patient know what's going on. Your patient's body didn't read the textbook."

To complicate matters, the outward signs of the relapsing-remitting form of the disease can come and go for years. "My first symptoms came when I was 19 and in nursing school," explained Carol Matthews, RN, of Springfield, Missouri. "I developed a case of optic neuritis [an inflammation of the optic nerve causing impaired vision]. I was treated with steroids, but no one said anything about the possibility of MS.

"Three years later, it happened again, and this time I had double vision. I went from doctor to doctor, trying to find out what was going on. Finally, I just gave up, because I felt I was being really weird. And I was being treated that way." It was 12 years and several doctors later before Ms. Matthews learned she had MS.

But even with a definite diagnosis in hand, medical professionals may be as loath as other folks to face up to their situation. "Denial is tough to overcome," said Margo Clark, RN, from Haskell, Oklahoma. "Going on therapy means admitting we have a chronic disease. And we don't want to do that. We'd almost rather walk around with steroids in one arm and a cane on the other than do something that's going to help us." Between diagnostic delays and denial, it can be years before a person with MS becomes a person on MS therapy.

Meds up!

Nancy J. Holland, the National MS Society's-vice president of Clinical Programs, started off the conference with a presentation about the Society's consensus statement. All participants agreed with the statement, which says that anyone with relapsing-remitting MS should consider talking one of the disease-modifying drugs, often referred to as the ABC drugs (Avonex, Betaseron, and Copaxone). All 12 were on some kind of drug therapy; 10 were taking one of the ABCs, one was in a clinical trial of combined therapy, and one other was talking an experimental drug.

The group agreed there is no "one right therapy", and that doctors and patients should carefully consider a number of factors in malting a decision. Trial and error may be necessary to find the right drug.

But for most, it's worth the trouble. "When my disease first started, the exacerbations were unbelievable," said Susan Roys, RN, of Seattle, Washington. "I'm now on Betaseron. I still have exacerbations. But they're not nearly as severe as they were before."

Margo Clark has experienced similar effects with Avonex. "I had high expectations when I started therapy," she explained. "I wanted the medicine to keep me from having more exacerbations, to keep me from going downhill so quickly. And it did. I feel like I got my life back when I started it."

"I'm very satisfied with Copaxone," said Dr. Roger Katz, an allergist from Los Angeles. "I looked at all the options and saw the evidence that was being gathered on Copaxone and what this therapy seems to do. I worked it out to be involved in the open-label study of Copaxone 5 years ago. I just wish I could have had access to a therapy when I was first diagnosed."

Hard-learned lessons

As a result of the conference, participants are making an effort to promote the Society's consensus statement, which explains the importance of disease-modifying therapy early in the disease. Members of the group have remained in communication via the Internet, and a subgroup--with the addition of several nonmedical people who have MS--met in November in San Antonio, Texas to discuss future projects focused on helping people through the therapy decision-malting process.

But the conference's greatest success was in giving its participants a new perspective. Back in Arkansas, Dr. Levinson has begun to see a silver lining to the cloud of his MS. He is no longer capable of performing invasive procedures, but still practices cardiology 3 mornings a week and oversees a cardiac rehab facility.

"I can't work the hours I used to, but that means I get to spend more time with my wife," he said. "MS has robbed me of my original career, but it's also given me back my family. And I think this disease has made me much more aware of the feelings of my patients. Not only how they feel with their own individual disease processes, but what they're going through mentally, spiritually, and emotionally. I think I'm a better doctor."

Henry Hample is managing editor of this magazine.