So, what is Transverse Myelitis?

It has been a week as of right about now, when I woke up and pretty much couldn’t feel my legs, wet the bed, and was hella, hella scared. It has been a whirlwind of a week, and although I am in the “hurry up and wait” to get moved to rehab, I feel I owe at least an initial explanation, and what is going on.

Transverse Myelitis is a condition where the immune system through processes that aren’t entirely known attacks the myelin sheath around the spinal cord. It can be caused by infections, and by autoimmune disorders such as multiple sclerosis. It can also be caused by an overreaction of the immune system to vaccines, and has been documented in cases of COVID-19. The key here is in up to 60% of cases the direct cause is never found. This is what is currently happening to me. They can’t exactly pinpoint what my cause is, but the fact is my deficits are real, and I have lost function to my lower extremities and I am now partially paralyzed.

This is a vertebral level based deficit similar to a traumatic spinal cord injury. It can occur at multiple levels throughout the spinal cord. Near as they can tell most of my issues start around T11 through L2 and go down from there. I start having big issues from about my belly button down. I have not been able to have an MRI to exactly pinpoint the issue, due to my pacemaker, but given the imaging I did have, that is where I do have some changes.

They did find I had an astronomically high SED rate, which is a marker of inflammation in the body, a normal level is around 20 or less, mine was 41 when they tested it last week. Something inflammatory is going on.

Recovery from Transverse Myelitis is possible, and some people do make full recoveries. Some, have mild/moderate deficits, and others end up totally disabled. I have been very lucky, in that I have always kept some feeling, though it feels like my nerve endings are going through jello. It will take time. I have to remember that. This is not going to be a fast road. The doctors are confident I will probably get to at least 90%, but it might take a year.

Fingers crossed I will be moving to rehab today. OT was already in, and PT will be coming soon I think. I am more than ready to get on to the next stage of my recovery. More later…