Living with Transverse Myelitis
Transverse Myelitis (TM) is a neurological disorder caused by inflammation across one segment of the spinal cord (mine was around T8). The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
I was 28 years old & 6 months pregnant with my 2nd child. I woke up one morning real dizzy & off balance. The dizziness went away and then came back pain. I just thought whew, this pregnancy is crazy rough on my body. After my daughter was born I came home still with back pain, I thought it was from the spinal block from my c-section no big deal. It takes a lot to get this big girl down. I got to where my upper thighs were so sensitive that my pants would hurt them. I began to shuffle when I walked. I knew that it was time to go to the doctor. When the Dr did a MRI I knew something wasn’t right because the techs started asking me lots of questions & my Dr called me back to his office while I was still in the MRI. I was told I had a tumor then MS. A spinal tap & 3 MRI’s later results showed I had Transverse Myelitis. The doctors started an IV of steroids, oral steroids, & shots of steroids. I gained over 60lbs. in 3 months. But…I could walk again. Seven years later, I am 75% recovered. My doctors gave me meds and said there is nothing we can do. There is no cure for this disorder. I still have a long list of issues:
No leg reflexes
Sensory dysfunction in the lower body
Coldness in feet
Binding feeling around feet
Sensitive to light (always wear sunglasses outside)
Exhaustion (the more I do, the more days I have to take to recover)
Episodes where for about 2 days my mind feels like it’s out of my body, I can’t talk or walk right (like a stroke)
Can not climb steps
Did I mention the pain
With all these yucks, I have the love & support of my family & friends especially my best friend :-* my husband. I just think, God has a purpose for everything and let his will be my way. I make everyday count with my family. My body can’t do the things it used to or wants but I have this amazing strength to make good memories with my children. I want to make everyday count.