Diagnosis: Transverse Myelitis

Arizona, United States

My journey started with a slow onset of symptoms. Over a period of three months, I started having strange nerve sensations in my right leg and when anything cold, like water, touched it, there would be a misfire of signals causing pain. Eventually, I started to feel like the outer part of my leg was going numb and I didn’t have full sensation when I would touch or rub my skin. I thought that perhaps, I was having some nerve issues stemming from my lumbar discs that I’ve had in the past. Soon after that, my left leg started to have issues. I woke up one day and couldn’t flex my toes or foot upward. Being in the medical field, I was certainly aware of foot drop.

By the next day, my entire leg started to involuntarily cramp in the middle of the night. It was so severe that I would have to stand up and straighten my leg in order to get it to stop. It was extremely painful. My left leg went “dead” over the next week. I was dragging it around, up and down my house stairs and had to lift it in and out of my car. I was waiting for an appointment with my doctor the following week to ask for a lumbar MRI. When I finally saw my doctor, she watched me drag my leg and then told me that I needed to immediately go over to the ER which was across the parking lot. They quickly assessed and sent me for a full spine and brain MRI that took 2.5 hours of laying in the tunnel. A neurologist and neurosurgeon were consulted. They came back to say they saw a large lesion on my spinal cord from C-7 – T-2. They admitted me into the Neuro unit for a week to give me extreme high doses of steroids to see if the inflammation would decrease so I could gain function of my leg back. I was literally scared that I would lose function of my left leg forever. I learned quickly that we take our health for granted and one day can change everything.  After the second day of steroids, I didn’t have much change in my leg, so they weren’t sure if the steroids were going to work. I was then sent for a lumbar puncture and my CSF did show inflammation and five oligoclonal bands, which is indicative of MS, but I had no lesions on my brain.

Over the next day, I started to be able to lift my leg and flex my foot. This was extremely exciting. And by the time I had my 10th dose of the potent IV steroid, I was able to walk and move my foot and leg like normal. I did lose muscle tone and was weak, but I had my leg back! Because I had lost function of one leg and nerve sensation in my other leg, the doctors diagnosed me with Brown-Sequard Syndrome. This was the syndrome that was being caused by the placement of the lesion. Since I hadn’t been sick or received any vaccinations prior to this event, the neurologist diagnosed my condition as Idiopathic Transverse Myelitis. There was simply no foundation to have caused this medical situation.

When I was sent home, I started rehabilitation. My balance was off where I felt like I was drunk 24-7, my cognitive function was obsolete and I felt like I had dementia symptoms. I couldn’t even complete a simple math problem. I also had to relearn to type on the computer and it would take me three times as long to read and write emails. I started physical therapy and continued a steroid taper that extremely irritated my stomach, created sores in my mouth and caused me to gain weight. In addition, I developed daily migraines that started in the hospital and they haven’t gone away since. I have tried all sorts of medications and none of it has worked, so their last resort is Botox. They said the lesion has triggered something in my body creating daily migraines since I’ve never had them before. Over the next month, my hair started falling out in clumps, I eventually lost two-thirds of my hair. One day, my son came to me and said, “Mom I can see your scalp.” It was the reality, not only was I just treated for a spinal cord lesion, but all of these additional problems started to occur. Eventually, the doctors told me that my type of TM was pretty rare and that I have a 30% – 40% chance of still developing MS. It’s now been six months and I realize that I have permanent nerve and muscle damage in my left leg that causes tightness, spasticity, pain and cramping. But, the most important thing of all is that I can still walk and I will continue to be strong and fight any progression or onset of new symptoms.

Tricia Romero