In Their Own Words

Devic’s Disease
Margherita Wang
Redlands CA

Like many of my fellow TM patients, I had never heard of this illness before I was stricken in July 1999. I also met with confusion and frustration as my doctors tried to deal with my sudden change from healthy person to one paralyzed at T-7 level. My attending neurologist said I had some form of “myelopathy.” He did put me on IV steroids and ran many tests, including MRI, spinal tap, etc. An internist on the staff finally said I had TM.

Meanwhile, my son, who is a physician in Seattle, found out on the internet that there existed a Transverse Myelitis Association and that they were going to have their first meeting in August. He attended the meetings and from what he had learned, thought that a plasma exchange might help me. However, shortly afterwards, I began to regain some movement, so my neurologist decided not to pursue the plasma exchange. I was discharged on August 16 th and went home with a walker and wheelchair.

Little did I know then that more troubles were coming my way. In early October, less than two months later, I started losing my vision. It first felt like a veil was being drawn over my left eye. My husband immediately took me to the ophthalmologist who could not find any problem. Within five days, my right eye was also affected, and I woke up blind and terrified on October 13 th. My son had been doing his own research, and called to ask my doctors about “neuromyelitis optica.” Back to the clinic and hospital for more exams and tests. I was admitted and given IV steroids for three days. My internist felt so sorry for me that he recommended I talk to a psychiatrist. It was comforting but weird talking to someone whose face I could not see.

My son flew down and asked my neurologist if I could have a plasma exchange. On October 18 th, I had my first of five daily plasma exchanges. Now my doctors and my son were busy looking up all they could about Devic’s as that is what they decided I had. It seemed that the only published study of treatment for Devic’s was done by Mandler, Davis, and Kornfield (Ann. Neurology 1993; 34:162-8). The patients in this study were given Azathioprine (Immuran) and Prednisone.

Miraculously, I slowly began to see; first, only shadows, outlines and dark colors, then, shapes, sizes and, finally, subtle color differentiation. The plasma exchange had left me anemic, so my doctors waited until mid-November to put me on Azathioprine (100 mgs/day) and Prednisone (10 mgs/day). Ironically, I had to change neurologists to achieve this new medicine regimen, because my former neurologist still claimed I had “myelopathy.” Since then, my new neurologist has tapered the prednisone to five mgs/day and kept the Azathioprine the same as when I started. He thinks I am doing well on this dosage. He examines me every 4-6 months, at which time blood tests (liver function and hemoglobin) are also done.

Although I walk slowly and awkwardly with the help of a cane, and have daily sporadic spasms and nerve pain, I am grateful for the amount of recovery that I have had. And, I am most appreciative of the support of my family, friends and The TM Association whose website and newsletters are full of valuable information and resource material. I would like to take this opportunity to express my heartfelt thanks to Sandy Siegel et. al. for all of their hard work!