Personal Experiences with Transverse Myelitis

Steph's Story

How it Began

I woke up one day in March 2006 thinking the day would be like any other day. It was a normal day until I felt a very odd sensation while shaving my legs. The sensation that I felt when I touched my leg felt odd. That's really the only way that I can describe it. I didn't think much of it at the time.

On thursday (about two days later) I starting experiencing pain. The pain was most intense in my left hip area. I also had pain in my lower back. It was not a sharp or unbearable pain, but it was extremely uncomfortable. I packed up and left work early that night.

On friday (the next day) it was even worse. The pain was not bearable and I had a difficult time sitting in my chair for longer than fifteen minutes at a time. The pain was less intense when I walked around. I packed up and left work at noon that day. At this point I was concerned that something might be wrong, but I thought some rest would solve the problem.

On Saturday I noticed that the odd sensation in my leg was actually numbness. The numbness had increased by this time. My left leg was numb, and my right leg felt normal. It was extremely painful to sit in any position. Laying was the most comfortable, followed by walking or standing.

First Trip to the Hospital

On Monday I was in an extreme amount of pain, so I went to the hospital emergency unit. The doctors conducted a medical history, physical examination, and multiple urine tests. This process took 8 hours, and then the doctors sent me home with a referral to a Neurology clinic. I was told the appointment would take a couple months because they were backed up. The physicians recommended Tylenol for the pain. Tylenol did not help even a bit.

I spent an entire week in pain. I left work early on some days, and I was absent on other days. The pain prevented me from sleeping each night, and I was averaging about 1 hour of sleep. I felt hopeless. I could feel that something serious was wrong with my body, and I felt that there was nothing that I could do about it.

Second Trip to the Hospital

The following Monday (1 week since the last visit to the hospital), I woke up and realized the numbness had risen to my chest area, on the left side of my body. It became difficult to feel any sensation in my toes, and it felt odd to walk because the sensation in my leg was nearly gone. At this point, I packed a bag and went to the hospital emergency unit again. I stood in the waiting area (too painful to sit) for about 2 hours before I could see a physician. Again, the physicians conducted a medical history, physical examination, and urine tests. After that, some blood tests were taken. Fortunately, there was a neurologist on-call at the hospital, and after conducting numerous tests, he suggested that an MRI be conducted. At this point I was admitted to the hospital.

I waited the entire night in the hospital hallway for an MRI. It finally happened at 4am. After taking the MRI images, they repeated the MRI with contrast, which allows them to obtain more information about the spine. The contrast involved injecting dye into my blood so the pictures provided additional information. They also did a brain MRI. The entire process took about 80 minutes.

TM Diagnosis

Shortly after the MRI, I was moved from the hospital hallway into a more comfortable room. This is when the neurologist came to give the news. I was not surprised when the doctor said I had transverse myelitis. I had spent hours researching my symptoms during the previous two weeks, and transverse myelitis was one of the things that I had read about. At the time, however, I was not aware that transverse myelitis is such a serious disorder. My lesion is located at the C5/C6 level.

My Treatment

I was treated with 1000mg of injected methylprednisolone that morning, and again that evening. I received another 1000mg/day for the two days following. The doctors performed frequent physical examinations, and my symptoms slightly improved after the second or third day. I was released from the hospital on the fourth day, with a prednisone prescription. The purpose of the prescription was to taper off from the high dose intravenous methylprednisolone.

My Recovery

I rested for a day, and then foolishly returned to work the following day. This was entirely too fast, and I would not recommend it to anyone. I really pushed myself too much too fast, which resulted in too much pressure and too much stress.

After about a month I felt 80% recovered. The most difficult issue was the constant aching back pain that I still experienced while sitting, especially for extended periods of time. I had an MRI done about 3 months later and the neurologist reported that the lesion had slightly decreased in size.

My Ongoing Treatment

It has now been about two and a half years since my TM attack. More information about my current condition coming soon..