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. 

Other things I have dealt with include bladder and bowel symptoms, urinary incontinence and retention, constipation, and fatigue. Oftentimes, my affected hip feels like it is going to collapse when I am walking. After holding my left leg down for 15 to 30 minutes, severe pain and swelling begin. Pain moves around in the area where TM invaded my body, and I have much difficulty turning over in bed which also creates pain. My Tempur-Pedic mattress and my mechanical bed raise my legs and feet which relieves my pain tremendously. Ice or a heating pad wrapped around my left foot or an ice bag under my knee are also helpful. Often it would feel like pins and needles sticking me, but the sensitivity in my leg and mobility has improved marginally. 

Losing part of my independence and not being able to socialize independently as I once did has been hard. My lifestyle has completely changed because of this illness. I miss driving to meet friends for lunch, and I now shop online, or my husband takes me shopping. 

Dr. Schnapp, my pain management doctor, helps with medications including Oxycodone, Fentanyl patches, and steroid injections. He said, “Socializing would be the best medicine as this is the key to getting better, even more than pain pills and exercise.” Because I am such a social person, he did not want me to become depressed. He recommended Billy take me out daily to socialize, so we now go out to lunch almost every day to be with people. Because of this, I have been in good spirits, even with the pain. 

Hydrotherapy helped to prevent pain compared to land exercises. Walking 30 minutes in the pool really helped–10 minutes forward, 10 minutes backward, 10 minutes sideways-and another 30 minutes of additional exercises to strengthen and improve my balance. Hydrotherapy strengthened my balance, increased my mobility, and gave me more endurance, but not all therapy was a success. A therapist tried land exercise first which caused too much pain that would last for days. Another therapist injured me severely by raising my leg close to my chest causing me to scream. She stopped for 30 seconds, repeated, again and again. She said she had to do it if I wanted to get better. One therapy session, she took her hands and pushed hard on my back and hip to get knots out which made the area extremely sore and caused my back to get worse instead of better even with moist heat, ultrasound, and a light massage on my hip and back afterward. This severe pain lasted three months. I told her my pain doctor said, “If it hurts, stop because the pain would take me so long to recover which would set me back.” Two other therapists also injured me, leading to bad leg pain which took three months each time to recover. I needed a TM-trained therapist. Two therapists treated my case like a sports injury, and one even used the phrase, “No pain, no gain”, which is far from the truth in my case. I never let them work with me again. 

With my therapist pushing a wheelchair behind me, I walked around the gym daily. I increased from 72 feet to 165 feet with assistance (over half the length of a football field), and then 190 feet. I could move my left leg out further with the assistance of a roller skateboard under the calf of my leg. I pushed down 25-pound weights 100 times, then 200 times another day. I did other exercises which began to show progress in my ability to move my leg. Even though I would get tired after two, 3 hour and 45-minute therapy sessions a day, my spirits were still good. My progress was even more than my doctor expected, and he believed I would be able to gain 95 percent of my strength back. 

After four weeks in hospitals, I returned home and began my new journey with TM, chronic pain, and as a fall risk. Billy had our house made powerchair accessible. The following day, I fell backwards when I lost control on my walker and fractured my L4. I had to wear a back brace for three months. After three weeks of wearing a leg and foot brace, I changed to orthotics in my support shoes for my fallen arch. Support stockings helped the swelling and pain as well. 

After six weeks, I began land and hydrotherapy five days a week. After several years and much improvement, I gradually shortened my days to four, three, and now two days a week. Land therapy was too painful, so my doctor advised hydrotherapy in warm water. I used a chair lift for several months until I became strong enough to climb the steps out of the pool. A year and a half later, it was a huge accomplishment when I climbed all nine steps on my own. Billy came to help me out of the water, but I showed him that I could climb the steps! He hugged me and told me how proud he was of me. My therapist said, “Next year will have great things in store for you!” It was such an encouragement from both. Through hydrotherapy, I gained strength, better balance, mobility, endurance, and began to feel and walk better with my walker. 

Through pool exercises and prayer, I became stronger. I had severe pain in my back and foot so when certain exercises made it worse, I stopped and began a different exercise. My doctor said to exercise and use my own discernment on when to stop due to the pain. When it started hurting, I had to stop, or it would take so long to get over pain, that I would have a further set back. 

Another doctor and therapist said my illness would take about two years to recover. Then, I would go from a powerchair, to a walker, then a cane. I know it will be a slow process since I am still on a walker, but I am making progress, and that is what really matters. 

The worst part of this journey has been the neuropathic chronic pain. On a scale of 1-10, my pain level had been around 8-10, improving for two months after I had a steroid injection. After 15 injections, I stopped receiving them because the last few injections had not helped. I continue to have pain in my affected areas, especially after walking or standing for 10 or more minutes. 

Dr. Jain told me that my Myelitis would not improve further until I had my left knee replaced. Seventy-one days prior to being diagnosed with TM, I had my right knee replaced, and I had my left knee replaced the following year in 2014. After four days, I was discharged to a rehab hospital. Following surgery, I missed six weeks of pool therapy, and my leg became stiff, which made me realize the importance of consistent hydrotherapy. I had a massage to help, but the pain that endured for a month afterward was not worth it. 

Setting my clock to take pain pills is also important, as it takes a long time to recover when I miss a dose. Resting daily helps tremendously. I have learned to push down with my left hand on my walker to keep my body from dipping down. Walking often and as much as I can prevents me from becoming stiff and keeps me from having pressure sores from my powerchair. Dr. Neel, my orthopedic surgeon, said steroids had settled in my hip and caused a problem, so I may have to have surgery to clean it out. 

Close friends are wonderful especially when an illness occurs. I asked two of my closest friends to walk this journey with me with their prayers, inspiration, and encouragement. The first year I received over 200 cards, which helped me to know so many cared for me and were praying for me in what I was going through. I continue to receive cards even today. 

I have experienced considerable improvement from paralysis on my left side, but I am still unable to walk without assistance and continue to have moderate to severe pain. 

God is good, and His grace has gotten me through each step of this journey. When I gave an update on my illness at church, I thanked everyone for their prayers and encouragement. Through my illness, I have chosen to keep a positive outlook. I told them that I felt like God will use this part of my testimony, but I do not know how He will use it just yet. I truly hope my journey will continue to help others through theirs. A cancer patient said, “You have given me hope!” 

We are praying that I can become more independent, walk better, not be a fall risk, become stronger, be in less pain, have stabilized blood pressure, and that Billy will continue to have his health to care for me. 

In 2015, I told Dr. Brantley, my primary care doctor, I wanted to drive again. He said that having his desire is a good sign I was getting better, and he encouraged me to continue to do more as I am able. 

Caregivers were helping me six days a week in the beginning, and the number of days were gradually reduced to no caregivers after eight and a half years because my long-term care insurance was depleted. Billy decided buy insurance 10 months prior to my diagnosis with TM which has turned out to be a huge blessing! Since I am so much better, we feel like we can make it on our own without caregivers now. 

From not cooking to preparing a complete meal with my husband’s help, I have seen significant improvement as to how far I have come. I cannot stand more than 10 minutes, but once I sit down in my powerchair for 10 minutes, I am back up just like a rabbit! Since 2018, I have improved and as of this writing, I can walk more and stand longer than ever before, until the excruciating pain sets in once more. I have also noticed a significant difference in having less fatigue and being able to do more things. I am so blessed! 

In December, Billy and I dressed up for Christmas and went to the Peabody Hotel for our annual Christmas brunch. You could not tell that I had TM except by my red scooter and support shoes.1 smiled hoping no one would notice my ugly support shoes! It was a wonderful time for us as we laughed and shared Christmas greetings with those we met. Being with others and doing fun things has kept me from being depressed during this challenging time. 

My husband takes excellent care of me. Billy is my encourager and daily prayer warrior. When I am dealing with severe pain he will place his hands on my painful leg or foot and pray for my specific need. Billy is so compassionate, a wonderful caregiver and husband, who I am blessed to share life with and love dearly. He has done so much to make my life easier and has made it to all my numerous doctor appointments. 

When experiencing an illness, it helps me to reach out and help others. Prior to the COVID-19 pandemic, I went to nursing homes to decorate the ladies’ walkers with ribbon, silk flowers, or holiday picks. The ladies were excited to have their walkers dazzled, and it lifted my spirits. I joined my husband doing a short phone tree devotional for our church family and friends weekly. 

Throughout this journey, we have gained precious stories of how God has shown up in this unexpected part of our life. The journey has been challenging, but with a loving, caring, and supportive church family, family, friends, Garden Club, pool therapy friends, doctors, and strangers, we have experienced God’s grace in ways that we could have never imagined. They have ministered to us with their prayers, words of encouragement, food, cards, gifts, visits, and expressions of love. 

With stem cell research, I am hopeful a cause and cure will be discovered to restore the nerve endings for Transverse Myelitis in my lifetime. This would be a miracle! 

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