I Volunteered to Lead SRNA Nebraska Support Group

Hello, everyone. I am the new leader of the Nebraska Transverse Myelitis Association’s Support Group. I want to thank Nikki Goeschel for all of her hard work in getting this group off the ground and providing so much support during this transition. I look forward to meeting many of you soon to discuss the future and mission of our group. I have been asked to write a story about my life with transverse myelitis. Sorry it’s not a shorter story but it has been a challenging couple of years.

My father was always healthy. He boasted that his only hospitalization occurred because his tonsils were removed when he was eight years old. He walked 3 miles every day and was seldom ill with anything even as simple as a cold or flu. At age 76, he was diagnosed with Idiopathic Pulmonary Fibrosis (“IPF”), a fatal disease in which deep lung tissue becomes scarred over time and ultimately robs a patient of the ability to breathe. My father died within 60 days of his diagnosis. I had never heard of IPF, even though it kills as many people every year as breast cancer. Like my father, I had been healthy all my life, with only one hospitalization for an appendectomy at age four. I told my family, tongue in cheek, that I would probably end up just like my dad. I imagined I would remain healthy all my life and then finally get some weird disease that no one had ever heard of. Enter NMO.

On December 24, 2012, in my early fifties, I had a whooping cough booster shot based on a doctor’s recommendation because my husband had been exposed at work. About three weeks later, I started exhibiting symptoms that I blamed on the flu — low-grade fever, mild headaches, and extreme fatigue. I was able to manage the headaches and fever with Tylenol, but the fatigue was relentless. Most nights and weekends, I couldn’t even get off the couch. Three weeks after the initial symptoms started, I developed skin pain that felt like I had a sunburn over my enter body –even though I didn’t have a sunburn. That’s how I described it to my family doctor when I visited her on February 1, 2013. She did some blood work and attributed it to a virus. She told me it would pass in 7-10 days.

However, my symptoms quickly worsened: I began running a high fever and losing my balance. I also began falling. I would climb half way up a flight of stairs and suddenly realize I was no longer able to remain upright and falling was inevitable. Fortunately, I fell forward and not backwards down the stairs, which could have been disastrous for me. My husband also said he noticed that I was not going to the bathroom very often. So I contacted my family doctor again, and she referred me to an infectious disease specialist.

On February 12, 2013, I showed up at the specialist’s office partially paralyzed and incontinent. She examined me for a few minutes and then said, “These two symptoms bother me. Do you mind if I call a neurologist?” The neurologist told her to admit me to the hospital immediately and was waiting for me in my room when I arrived. By the time I arrived at the hospital, I was paralyzed from the chest down. After an exam, the neurologist ordered a series of MRI scans. I had been given a lot of Ativan, but I recall that my neurologist phoned the same evening advising me that I had something called transverse myelitis (“TM”), which sounded to me like something from outer space. He said he planned to start treatment with high doses of corticosteroids the next day. Looking back, I am grateful that I had a neurologist who knew he was looking at TM.

I spent the next three days in the hospital receiving infusions of Solu-Medrol and undergoing a series of tests and more MRI scans. I learned that I had extensive inflammation throughout my spinal cord. I had what is known as Longitudinally Extensive Transverse Myelitis (“LETM”), which is a spinal cord lesion that extends over three or more vertebrae in length. My MRI revealed that I had a lesion that was effectively seven vertebrae in length. I also had some diffuse inflammation in other areas of my spine. The MRI scan of my optic nerves was normal, and my brain MRI revealed lesions that are not typically seen in a person with multiple sclerosis. My neurologist ordered a lumbar puncture to test for Multiple Sclerosis and an NMO-IgG antibody whose presence could mean I have a rare disease called Neuromyelitis Optica (“NMO”). That is the first time I had heard of NMO. I researched TM and NMO at https://wearesrna.org and refused to believe I had any of the diseases listed on SRNA website. Certainly, I couldn’t have that weird disease described as NMO. I’m simply not that unique. Three days later, I left the hospital with the assistance of a cane and finished my last two days of Solu-Medrol infusion as an outpatient.

Since the beginning of my illness, I have displayed mixed clinical symptoms including seronegativity for three NMO-IgG antibody tests (despite LETM and other symptoms of NMO), which has made an official diagnosis of NMO difficult for physicians in Omaha and at Johns Hopkins University. Neurologists at the Mayo Clinic finally confirmed a diagnosis of NMO in September 2014. Since my initial presentation of TM, I’ve had five more relapses of the disease. I have had Longitudinally Extensive Optic Neuritis (“LEON”) in my right eye, a less severe attack of Optic Neuritis in my left eye, and three separate incidences of disease activity in my brain. At the same time, I have been struggling with the damage left to my central nervous system (“CNS”) by TM, such as chronic neuropathic pain.

I have suffered great indignities, along with professional and personal losses at the hands of this disease. As an attorney, I used to travel across the country handling arbitrations and mediations for a broker dealer. I loved my work. Now I am disabled and can no longer work as an attorney, in part, because I have chronic fatigue and I am constantly looking over my shoulder for the next relapse. Additionally, I still struggle with the damage done to my body by the initial attack of TM. I spend most of my time visiting physicians or otherwise tending to my care. I have had to fight with my employer, my health insurance company, my disability company and my own health care providers to get adequate treatment for this disease.

Two and 1/2 years after TM, I have assembled what I think is an excellent group of providers and caregivers with me as the captain of my care. I am stable for the first time in over a year thanks to the efforts of my local neurologist and my NMO specialist at Mayo. One of the greatest assets in my continued recovery and search for my new “normal” has been my personal trainer who has been instrumental in helping me with muscle strength, endurance, energy, self-confidence, and most importantly, balance and coordination. My hope is to continue to remain stable and improve my health. I would also like to help people with NMO, TM and other rare neuroimmune associated diseases, to navigate through the many challenges of this weird disease. That is why I have volunteered to help lead the Nebraska support group for the Transverse Myelitis Association.

~ Kelly Davis