By Melanie White
On April 28, 2014, I was at work and waiting to go to my nephew’s baseball game at 4:00pm that afternoon. At about 3:00pm, my arms started to ache really badly from my shoulders down to my fingertips. I thought it was just from being on the computer all day. I went ahead and went to the game. After I got there, I started to feel bad but I wasn’t sure how, exactly, just off. I tried to open my water bottle and could barely get it open. So I got up and tried walking and immediately told my sister something was wrong. She got my husband, and we headed to the hospital.
By the time we got there I was weaker, and my whole body was tingling. I couldn’t keep my legs still and felt pain but wasn’t sure where the pain actually was. The emergency room (ER) doctor just assumed I was there for pain medication and didn’t do anything for me for a while. At one point he came in and I told him I needed something; my body just felt so strange. He asked why my eyes were red. I said, “Uh, from crying!” Then he wanted me to stand up, and I said I didn’t think I could now. He said to try, so I did. He was on one side, my husband was on the other, and a male nurse was in front of me. I went straight down! They caught me before I hit the floor, and he finally started to treat me. I had a CT scan which didn’t show anything, and I was admitted.
By the next morning, I was paralyzed from the chest down. My doctor came in the next morning and said they didn’t know what was wrong, but I needed to be transferred to a hospital that could find out. So I was sent to a hospital two hours away by ambulance. Tests began, things were ruled out, I received IVIG, and finally a diagnosis of transverse myelitis. I went to rehabilitation after about a week and began learning to walk again. I had to do physical therapy (PT) as well as occupational therapy (OT) to be able to use my hands and get them stronger. I had to learn how to make beds, fold clothes, and make a sandwich all from a wheelchair in case I couldn’t walk again. Fortunately, I can walk but with a walker and a very bad limp. I have damaged nerves (C5-7), and my hip flexor will not work so I can barely pick up my leg, plus I have foot drop, so my left leg barely clears the floor. The whole left side is a problem. I have a weak hand and burning nerve pain in my arm, hand, hip and left buttock. It’s really hard to sit most days. My lower leg is numb but feels temperature and is tight all the time. I have lost my balance. My torso has no feeling, my right leg doesn’t feel hot or cold, and my feet think they are cold, all the time!
After about a year and a half, my primary care practitioner (PCP) wanted me to go to Mayo Clinic, as he just wasn’t completely satisfied. I did, because I was sick of the walker by this time and just knew they could fix me. I received tests, bloodwork, and a diagnosis: spinal cord stroke and possible transverse myelitis! So, I will always have the walker and all of the other issues listed as well as bladder problems, fatigue, etc. Oh, did I mentioned my husband divorced me after about two years? He just hadn’t been happy for a long time, supposedly! But as I read in another blog, no one can understand the invisible effects of this disease unless you have it!