Diagnosis: Transverse Myelitis
Wisconsin, United States
Spring break of 2017 was supposed to be a week of house cleaning, dates and adventure with my husband, while our son was with his grandmother in Hawaii. We had grand plans! I had recently, 28 days prior, started a new job. Three days of terrible head-zapping headaches turned into fatigue like I had never experienced before. The days leading up to my Emergency Room (ER) visit were filled with flu-like symptoms, two visits to urgent care and several doctors dismissing me as having a virus. They prescribed rest and over-the-counter pain relivers. I used a doctor’s note to excuse one of my absent days at work. Feeling horrible about just starting my new job, I tried really hard to make it through my shifts. While at home, it was getting harder and harder to get up from sitting, get out of the bathtub and eventually even walk. On April 19, 2017, I asked my husband to take me to the ER with painful urinary retention. I walked in, and within two days I was paralyzed. It started with my feet and continued up to my chest. Not knowing where or if it would stop was terrifying.
I was admitted to the hospital after a lumbar puncture and a night in the ER. They moved me to a room I would live in for three weeks. University of Wisconsin Medical Center doctors that worked on my case consisted of neurology, infectious disease, and rheumatology specialists. As the days and tests went by, each department left my case, leaving only neurology. I was a real mystery to them. They sent my case to other research hospitals for answers and causes. Days turned into weeks, and I still had no diagnosis. We had pages of negative test results. In the middle of week two, they started steroids and intravenous immunoglobulin (IVIG) hoping to decrease the inflammation. I was told I had inflammatory myelitis. With no cause, I was a special case. I was discharged from the hospital and transferred to an intensive inpatient rehabilitation facility. I worked three hours a day with physical therapy (PT) and occupational therapy (OT). My husband, parents, and friends took turns visiting me, nourishing me with outside food and bringing fresh laundry. I was discharged 4 weeks later in a wheelchair.
The most challenging part of living with Transverse Myelitis is not having a clear-cut path to a cure. I am working hard in therapy, but I still experience physical limitations. I returned to work five months after diagnosis with a walker and now use a cane on occasion.
I am hopeful the medical community will continue to figure out how we can all heal and recover to have the best quality of life. My therapists and I believe I was discharged too soon from inpatient and outpatient rehabilitation, resulting in me paying out of pocket for continued care. I would like to advocate for extended access to rehabilitation. Time is important for regaining use of our bodies, so delaying therapies is not optimal. Connecting with fellow TM warriors online has been a game changer. I have had less feelings of “me against the disease” and so much more hope that together we can find answers. There is real power in numbers and power in real conversations!
Maleah is a new Support Group Leader for the Transverse Myelitis Association.
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