My Story with Transverse Myelitis

By Barbara Ross Harris 

I never imagined a day when I would not walk normally. But on March 29, 2013, I became paralyzed on my left side. I was 69 years old and diagnosed with Idiopathic Transverse Myelitis, a rare and painful autoimmune illness. 

March 29, 2022, marked the ninth anniversary of when I felt excruciating pain in an area on my back about the size of a large grapefruit. It quickly wrapped around my abdomen and my blood pressure spiked. I felt bloated and miserable. My husband, Billy, offered me two Advil, an ice pack, heating pad, and medication for high blood pressure, but nothing helped so Billy quickly drove me to the nearest hospital. The ER took me immediately upon arrival. When asked for a urine specimen, I was dizzy and unsteady while walking, so a nurse had to hold onto me. At home, I had been walking fine, so I knew something had become much worse. The doctors and nurses began their routine of tests to determine what had caused such pain in my body. An MRI, spinal tap, CAT scan, and blood work were all done over the next several hours. 

I was given a morphine shot for the unbearable pain I was now feeling in my left leg. I told Billy that I could not move my leg, and we were greatly concerned. With no relief after one hour, I had another morphine shot. Then, my left foot seemed to be paralyzed. Needless to say, I did not ask for any more morphine! When I told the nurse about my leg, she asked me to walk for her. When I stood up, I could only drag my foot a few inches, and my other knee almost buckled. I was paralyzed on my left side from my waist through my toes. 

Once my pain subsided, the doctor wanted to dismiss me from the ER and asked the nurse to bring a wheelchair. But we still did not know what was wrong. I told the doctor I could not walk, and he made me prove it to him–holding me on one side with a nurse on the other to see if I could walk. The doctor asked what I wanted him to do, and I responded, “Admit me to the hospital to find out what is wrong.” Finally, I was admitted to the hospital around 2:00 a.m. the next day. 

Morning brought examinations by neurologists. One doctor thought I had Multiple Sclerosis, often known as MS, and another doctor thought I had Transverse Myelitis (TM). My back and abdomen continued hurting, and my stomach burned. At 4:00 a.m. Percocet and Nexium by IV were ordered, and I had some relief. Next, the doctor ordered sleeves to be put on my legs as well as the use of a massaging machine to help keep down blood clots. My left foot was swollen so large that an extra-large sock was cut and put on my cold foot for some warmth. The results seemed serious according to my neurologist’s comments. As always, we turned to God for guidance, strength, and peace to help us and the doctors. We thought: “We do not know what the future holds, but we do know the One who holds the future”. After days of testing and no clear reading of an MRI of my lumbar, I was transferred by ambulance to Methodist University Central Research Hospital in Memphis, Tennessee, for aggressive treatment and testing. Time was of the essence, and we were supposed to know something within 48-72 hours. The University doctor, Dr. Lopez, recommended a plasma exchange treatment which would consist of 10 procedures over 15 days with no guarantee of recovery. The risk factors were critical in making the decision not to have this procedure since it could have serious side effects. The damage had been done, and I was in a plateau stage with a chance of getting better with steroids. 

After 5 days, a decision was made to remove my catheter and bodily functions began to respond on their own. Finally, the leading neurologist diagnosed me with Idiopathic Transverse Myelitis and inflammation of my spinal column. This illness was impacting multiple parts of my body: left hip shifted outward, my left leg was weak and unstable, the arch of my foot fell, and toes were twisted to the left and could not straighten them. I experienced chronic pain in my lower back and other affected areas. I became a fall risk, had spiking blood pressure, a cold foot and leg, discoloration of skin, and I could not walk without assistance. 

The inflammation was in the T2, T3, and T4 areas of my spine. Strong doses of steroids were intravenously given at first, then orally for 2-3 months. Prednisone and other medicines were ordered to reduce the inflammation in my spinal column, and Oxycodone was given for the excruciating pain. My blood sugar was checked often because of the steroids, and my doctor said my immune system would be low. Due to this, I had to stay away from anyone who was sick, drink more water, eat no sugar, temporarily maintain a diabetic diet, and eat more fruits and vegetables. The paralysis moved upward into my abdomen and my left leg, foot, and abdomen were hard and swollen, but my neurologist was encouraged by the steroid treatment. Because my illness was discovered soon after it began, the prognosis seemed better, which was a bright spot in my dark experience. 

Earlier, I had been losing strength and felt like my leg and hip were going to collapse when walking. In addition to sore shoulders, my arms were weak from transferring out of a wheelchair and the left side of my abdomen and groin were in extreme pain. My leg and foot began to move and gained more sensation! At times it felt like needles sticking in my upper leg and hip. The doctor said it was a good sign that feeling was returning and pushing my foot down would come first and pulling my leg up would be last. After several days, my paralysis improved, but left my affected area weak. I could not balance or walk on my own. 

After 11 days in two hospitals, I was transferred by ambulance to HealthSouth North Rehabilitation Hospital for about two weeks. In therapy, I learned to dress myself, needing assistance only with pants and shoes. Therapists taught me to walk using a walker, and I gradually regained partial mobility. A brace inside my shoe helped support my fallen arch while walking, and exercises helped to strengthen my body. One thing that really helped was when my therapist put a device on my leg with weights. I would swing my left hip on and off from a mat to build strength in my hip and leg. When I did an excellent job, she said, “You have made my day!” She wrapped an ACE elastic bandage around my foot and leg to help drag them when I walked. With assistance, I continued to walk a little further each day. 

Symptoms in my leg and foot have included weakness, tingling, drawing, numbness, coldness, affected nerve endings, heightened sensitivity to touch, and painful muscle spasms in both legs that typically happen at night for 30 minutes to three hours. If my blood pressure got low, I would endure the pain so it would not bottom out by taking pain medication. My blood pressure has dropped in the range of 77/44 multiple times.