Devic’s Disease

The first time a physician said, “You may have MS,” I automatically said, “I can’t have MS. I have lupus. You can’t have both.”

Well, was I in for a surprise. I was diagnosed with lupus in 1994, shortly after the birth of my first child. I was experiencing painful joints and began a regimen of low dose prednisone. I had always been very active and healthy. Two weeks after the birth of my second child, I experienced daily vomiting; sometimes up to ten times a day. After insisting on an endoscopy, (my family doctor suggested post-partum depression), I was diagnosed with gastroparesis or paralysis of the stomach.

This was my first case of paralysis, and it lasted for four weeks. I continued to see my rheumatologist, and after about a year, I noticed some numbness in my abdomen and left leg. I also felt intermittent burning on my chest. At times it felt like a painful sunburn. I saw a neurologist and had an MRI, but it was inconclusive.

In 1997, we moved from Texas to Cincinnati. It was a stressful time. The kids were ages one and four, and I was starting a new job. I woke up one morning feeling as though someone had hit me hard in the eye. My vision rapidly deteriorated. Within three days, I was referred to the Cincinnati Eye Institute and diagnosed with optic neuritis. I remember a doctor saying, “You might not have lupus. You might have MS.” I later discovered that a small percentage of lupus patients do develop MS. It was frightening, and I went on my first round of IV steroids. My vision improved slightly, but never did return to normal.

On Halloween of 1999, I noticed that my gait was unsteady. I had to hold onto my son while we trick-or-treated just to keep my balance. I was now taking neurontin and prednisone, and seeing both a rheumatologist and neurologist. My rheumatologist decreased my prednisone dosage, and immediately the chest burning and left-sided numbness returned, accompanied by intense pain. My MRI of the brain was normal, but the spinal MRI showed a lesion in my cervical spine.

By mid November, I was again on IV steroids and had two spinal taps, both of which were normal. My neck hurt and I was having spasms on the left side of my body which were also very painful. Over the weekend, I began having intense chest pain. It felt like someone was stabbing an ice pick into my heart. When it subsided, the pain came through my back. By Monday I could no longer walk or move my arms. Another MRI revealed that the lesion was “enhancing,” or that inflammation was present in my spinal cord and brainstem. There were still no lesions in my brain, and my spinal tap was normal. I was admitted to a tertiary care facility and given IV steroids again. I was told that there was little hope for recovery. If I did survive the night, I would not regain the use of my arms or legs.

My family gathered at the hospital. My children were brought in to see me. Seeing my kids gave me the determination that I would get through this. My priest visited and anointed me with oil and gave me absolution. As a devout Catholic, I took great comfort in praying the rosary and asking for G-d’s grace. I was so scared.

The next morning I awoke and had some movement in my legs. I could not feel them, nor could I feel my arms. I could move my left arm slightly. They call this “altered proprioception,” or not knowing where you are in space. I was given a walker and a physical therapist strapped a belt around me to catch me if I fell. I watched my feet and said, “left foot, right foot, walker,” as I shuffled down the hallway. I spoke with my neurologist by phone and she was shocked to hear that I was walking. She gave me another new term: Devic’s Disease. It does not respond to the traditional MS drugs.

My doctors have called my recovery “remarkable” and “miraculous.” It took about 18 months to recover my fine and gross motor function. In the beginning, I couldn’t feed myself or blow my nose. I couldn’t raise my arms to wash my hair, or turn a page in a book. It took 45 minutes just to get dressed. Tying my shoes was so frustrating.

After being discharged from the hospital, I spent some time at a rehab facility. After that I had out-patient PT and OT for four months. I still experience pain in my neck and left shoulder, and stiffness in my left hand. At night my left leg has “burning pins and needles.” But I feel very fortunate to be able to walk and have normal bowel and bladder function. My biggest battle is with fatigue.

Today, I am able to work part-time as a home health nurse. I am the busy mother of two boys, ages eight and ten. I have a very supportive family who really helped me out when I needed it most. They also knew when to just sit and listen, and when to back off and let me do things for myself. I feel very fortunate to be alive.