Why I’m Attending the 2019 RNDS

By Sherry Boyack

I registered for the Rare Neuroimmune Disorders Symposium (RNDS) because I have transverse myelitis (TM). My case is not as severe as some, but it definitely affects my life. I was diagnosed in October of 2017 when I had strange tingling sensations from my neck down. (This was after my daughter had brain surgery, my brother had open heart surgery, and both of my sons were in a three-car traffic accident in the 2.5 months prior to my diagnosis.) At first, doctors dismissed it as a virus. Nine days later, after seeing a general practitioner a second time, I was referred to a neurologist. She took my symptoms seriously and ordered three hours of MRIs. I left the hospital after the MRIs to get my hair cut. The doctor called to tell me to come back and admit myself to the hospital because I had TM. I stayed in the hospital for seven nights for a lumbar puncture and high dose IV steroid treatments. My symptoms didn’t really change, but I was exhausted, and my immune system felt weak after the steroids. I was working at the time. A doctor in the hospital said I could go back to work as a teacher’s aide the next Monday. I couldn’t imagine how that would be possible.

I tried to work, but I worked mostly half days through the Family and Medical Leave Act (FMLA) days that I was granted through the school district. At the end of the year in my performance review, I was given a low score in the attendance category. That was tough because I was pushing myself to be at work even half days. I think this is an example of the lack of understanding of this neurological disorder. I looked normal on the outside but was really struggling to make it through each day.

I was getting physical therapy (PT), but it was very painful. My daughter who was studying to be an athletic trainer at the time went with me to a session. She was furious and said that the therapist was too rough. I told my neurologist that PT was painful, and she confronted the physical therapist. After that, he changed my routine to exercises with weights that made me incredibly sore. At that point, I canceled the rest of my appointments with him and went to see a therapist whom I had seen before for knee therapy. He did things that brought me some relief and helped me get stronger.

While my tingling nerve sensations never went away, I started taking prerequisite classes to be accepted into a nursing program at a community college. Just recently, I went to the first day of nursing classes. I had to withdraw, however, because the hepatitis B shot that I got for the program two weeks prior caused my TM symptoms to flare up. I wasn’t sleeping at night because of my overactive nerves and spasms. I am exhausted. I’m hoping to try again next semester.

I’m going to the conference to meet other people with rare neuroimmune disorders and to learn more about TM and how to find medical help in my area.