Transverse Myelitis is autoimmune neurological disease where the immune system attacks the protective sheath around the spinal cord (myelin) causing it to swell and compress the spinal cord. There are a variety of causes and it’s extremely rare so data and information resources are limited. Most of the information that I’ve found and used has come from multiple sclerosis and partial spinal cord injury documents. Outcomes vary wildly, there are some people that have near-full recovery, some that have only partial improvement with lingering issues, and others that don’t improve at all. I fall in that middle category. More information can be found here: What is TM?

There isn’t a cure for TM. There are treatments during onset that help mitigate the swelling and minimize the immune systems response, but once the damage is done there is no cure. It takes time, physical and occupational therapy, and patience.

There’s a variety of causes of TM. Many have a viral cause where an immune response is triggered by viral infection, but the immune system attacks the myelin instead of the infection. Other times a response to a vaccines can cause it. It can also be a symptom of a different disease, MOG Antibody disease, neuromyelitis optica, multiple sclerosis, and others can cause TM. Generally because of the rarity of TM and the difficulty of determining root cause, it is usually determined to be idiopathic. This can be extremely frustrating for people suffering from TM. Coming to terms with something so life-changing without a cause feels unfair.

I had rapid ascending paralysis/numbness, starting in my feet and ending at my chest midline. It took multiple MRI’s and lumbar punctures to determine the root cause of my paralysis. Initially I was diagnosed with Guillain-Barre syndrome but after about 24hrs, I was correctly diagnosed with TM. My major lesion is from C6-T2 on my spinal cord, but I have smaller spotty lesions throughout

My main issue that I cope with daily is nerve pain. It’s throughout the lower part of my body and my left arm, it’s generally manageable with medication but there are good days and bad days. Beyond the pain I also deal with some lasting bowel/bladder issues and coordination problems. I have significant proprioceptive loss, especially in my left leg, so I generally have some balance issues. Unless I’m clicked into my pedals or my skis, I’m pretty clumsy 🙂

I don’t think I’ll ever consider myself “recovered”. I’m still adapting, learning, and improving all the time. Broadly it took me about six months to walk confidently with only a cane and about eight months to start walking somewhat consistently without any walking aids. I started riding a bike for short distances after about eight months. I had a pseudo relapse after about 9months which caused my recovery to regress significantly and I was back walking with a cane for another six months or so while I recovered from steroid myopathy.

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