Inside a clinical trial.

I have MS and do not like it. Not at all. It has ruined the life I once had and left in its place a life that is somewhat disabling, and sometimes embarrassing and unsatisfying. It has left a sadness that is often hard to deal with, a frustrating problem, a daily worry. Yet, like many of my peers, I somehow pick up the pieces and make the best of life. Fortunately, continuing research seems to be closing in on the causes of MS and ways to better address the symptoms. Which brings me to the point of this article.

About five years ago, when an MRI proved I had MS, I felt total shock. "Why me? How could something like this happen to me?" I asked. "I'm a pretty good person. It's not fair."

I'm not the type of person to have control taken away from me as this disease has attempted to do, so I called my chapter of the National Multiple Sclerosis Society, told them my problem, and joined. I'll always be glad that I made that call for two reasons: one, because I don't feel so alone anymore and two, because they sent me this magazine.

One of the issues told of an up-coming clinical trial to be done through the Yale School of Medicine Neuroimmunology Clinic and the University of Medicine & Dentistry of New Jersey. It involved a combined total of 45 volunteers. I don't live far from Yale, so I called and asked to be a volunteer.

An appointment was made to meet me. I found the doctors to be very personable, professional and open with me. They answered my questions concerning the trial and whether participation would hurt or help me and much more. The trial was for TLI, total lymphoid irradiation, and involved the use of prednisone. A pilot study of TLI had already been done and this trial was based on that. It suggested that TLI might stabilize certain people with chronic-progressive MS for three to five years.

Half of us received TLI. All of us received the low-dose prednisone. Funding for this study came from the National Multiple Sclerosis Society. The TLI and the clinic visits were free of charge: laboratory costs were billed to our respective insurance companies. This trial was a double-blind trial, meaning that neither we nor the research/medical staff were aware whether we received the real TLI or a make-believe session under the X-ray machine.

Participation in a clinical trial might seem exciting, but I found that it is not something to be taken lightly. First of all, there was an involved screening process to go through, during which the volunteer is only considered to be a candidate for participation. I do not think there was a part of my body that was not either poked, X-rayed, or otherwise examined prior to my being accepted as a participant. This alone required great deal of patience and endurance.

Being in the trial also required changing my schedule and schedules of those close to me. (Thankfully, my MS never seemed to get worse from all the disruptions.) I was hoping that I was receiving the real TLI, but I won't know until all the study data are reviewed. I was somewhat frightened by all the tests and by the X-ray machine itself. It looked like a giant robotic creature as it turned around me.

The doctors and staff always treated me well. I actually reached a point where I didn't mind seeing the doctor. I knew he'd really listen to me. Two doctors always saw me during my appointments. One checked various body functions for test comparisons; the other actually took care of me, including filling out forms.

I have been followed medically for three years with regular appointments and monthly questionnaires about my physical and emotional state. I was given a hot-line number to use if I needed. Calls were all returned promptly and concerns were handled in a very professional way. I know. I was taken off prednisone as a result of one of the calls I made concerning an infection I had. Although I am personally grateful for the attention I have been given, the trial was an emotional stress on me and my family.

Now that my part is over, and I can put it in the past, I feel it was an interesting experience. Would I do it again? Would I take part in another trial? Probably. I don't know what was learned from the trial. I understand that the results are still being analyzed.

But I do know that without volunteers like me, there could be no trials at all.

Let's hope there will be more trials and that they will bring us good results. Only this way can we raise a flag of victory against this crummy disease.

Paula Sardone, a freelance writer and former newspaper editor, developed MS about five years ago. She has six children and a dozen grandchildren.