What's Wrong with Me? How to Deal with a Scary Health Diagnosis
Kathleen M. Reilly faced more questions than answers after identifying her mysterious illness.
Every mother I know regularly ties on her Supermom cape to take on more family duties than she probably should. Most of the time that heavy workload just leaves us tired or cranky. But two years ago it sent me spiraling into a health crisis.
Three months before feeling a strange tingling in my back, I’d started a 30-hour-a-week job with an eye toward raising college funds for my 14- and 15-year old sons. On top of that, I was building a thriving marketing business, managing all the family finances, caring for our elderly dog and keeping our one-acre property from becoming an overgrown wilderness. I came down with a severe respiratory infection that left me flat on my back for a week with barely the energy to cough. After it had run its course, the tingling started. The left side of my back was growing numb, as if it had been injected with Novocain. My doctor wasn’t sure what this was, but she gave me an antiviral for shingles just in case.
Two days later, the numbness wrapped around my left torso. But if I very lightly ran my fingers over my skin, it felt like the world’s worst sunburn—with tiny shards of fiberglass embedded on top. I went back to my MD, who prescribed prednisone, thinking the symptoms could be related to inflammation. Then things got worse. By the following week, the condition had spread down my left thigh. My doctor ordered X-rays (which found nothing) and an MRI (which picked up a suspicious dark cloud along my spinal cord). She threw out frightening possibilities (multiple sclerosis, a spinal tumor) but ultimately sent me to a busy specialist—who I pushed to get an appointment with a few weeks later. By the time I saw her, the numbness and pain ran down my entire left side and were spreading to my right. Walking took focused effort, and navigating stairs was an exercise in stumbles and sweat. The only good news (if you can call it that) was that she knew what had me losing control of my body: transverse myelitis.
With only about 1,400 cases diagnosed each year in the U.S., transverse myelitis is a rare neurological disorder that is caused by inflammation of the spinal cord. “Most practitioners relate spinal cord disease only to trauma, so the initial symptoms can be difficult to link to transverse myelitis,” explains neurologist Benjamin Greenberg, MD, director of the Transverse Myelitis and Neuromyelitis Optica Program at UT Southwestern Medical Center. The disease may follow an infection (as in my case), could result from autoimmune disorders, may potentially be triggered by certain vaccinations or simply have no known cause. Unfortunately, the resulting inflammation damages nerve cell fibers that foster communication between your brain and your body—hence my loss of feeling, trouble walking and burning sensations. Many patients lose bladder and bowel function but, thankfully, I didn’t.
Having a diagnosis gave me a spark of hope until I asked about treatment. The neurologist shook her head as she said, “There is no single treatment, but there is a 33% chance you’ll recover fully.”
I’m no math whiz, but I wasn’t thrilled with those odds. “There’s a 33% chance the damage is permanent,” she continued. “But there are therapies to help you cope.”
“We’re still missing about 33%,” I said nervously.
She nodded. “There’s an equal chance it will continue to progress,” she replied. That would lead to full paralysis, she further explained, and if it headed north, up to the part of my spine that controls my diaphragm, I wouldn’t be able to breathe. “How do I know what’s going to happen?” I whispered.
“We’ll get you back in here in a month and take another MRI to see how it progresses,” she said, opening the exam room door. Since I’d already been on antivirals, anti-inflammatory drugs and pain meds to no avail, there was nothing she could offer me.
I left the office, emotionally numb from the news, and called my husband. Driving home I was in a fog—yet I still focused on my to-do list: Buy groceries. Take my youngest to football practice. Get his brother to play rehearsal. Bring the truck in for inspection. That night, when all the chores were done and the house was quiet, the weight of my diagnosis finally hit me. Even though I’d continued to function on autopilot, I realized it was time to start powering down and ask for help.
The next day, I told the kids what was going on. My 15-year-old son immediately took control of making dinners, my 14-year-old tackled dishwasher duty, and they both started leaving little gifts (like peanut butter cups) on my keyboard. My husband spent more time driving the kids to their activities. Having more free time allowed me to furiously research my condition. I drastically changed my diet, adding B vitamins to strengthen my nervous system and loading up on whole eggs, greens, seaweed, fish and beef marrow, which some studies suggest can support and repair the nervous system. Even though there’s no proven research on diet’s impact, I still tried.
At my worst, everything from my ribs down to my legs on both sides was completely engulfed, and the muscles were painfully contracted. I would sit in the parking lot, looking at a store entrance for five minutes, psyching myself up for the walk. I pushed aside the possibility of full paralysis or the even more terrifying prospect of needing a ventilator. Each morning I’d do a systems check in bed: Could I feel this spot on my leg? This one on my side?
“Recovery from transverse myelitis varies from person to person,” explains neurologist Bibi Bielekova, MD, chief of the neuroimmunological diseases unit at the National Institute of Neurological Disorders and Stroke. “In some cases, other neurons act like ‘good neighbors’ and take over the function of those that died. In others, damaged neurons repair themselves. But there’s nothing you can really do but wait and see.”
After three fearful months of waiting, I woke up one morning and gasped. I’d wiggled my toes and, for the first time in forever, I’d felt them!
It took almost a year to recover completely. Once the feeling in my legs had returned, there still were places, like the inside of my knees and the top of my foot, that were totally numb. Those, too, eventually healed—as did my need to take on more than I could handle. Now I delegate more, as I’ve realized I’m not a one-woman show. I’m part of a family. And I’ve learned that working together is one of the keys to keeping us all healthy.
How to Face a Scary Diagnosis
Beware Dr.Google. Although you can dig up plenty of useful information on the Internet, you can also uncover tales of doom that may scare you senseless. Be sure to give more weight to info you find on official associations’ pages and legitimate medical sites.
Ask for Support. But choose wisely: You know which friends will readily lend a shoulder and which are alarmists or will make it all about them. Seek comfort only from people who can give you what you need during a crisis.
Take a Break. It’s easy to let fear consume your thoughts. Keep it at bay by scheduling non-negotiable worry-free time, like a trip to a favorite museum or an amusement park with your family.
Need more information? The Transverse Myelitis Association myelitis.org, The Johns Hopkins Transverse Myelitis Center hopkinsmedicine.org, National Institute of Neurological Disorders and Stroke ninds.nih.gov