The 6 week wait to get into the MS Clinic at St. Michael's after getting the MRI results was nothing compared with the 7 months of waiting that came before that. Even though the MRI results had shocked me with the less than ideal news of inflammation and demyelination in my spine, I quickly discovered that knowing why my body was numb was exponentially better than not knowing why my body was numb.
The clinic at St. Mike's is a special place in every way possible. I felt cared for, listened to, and validated. After a series of assessments, the neurologist, Dr. A gave me good news. She believes what I experienced will most likely be a single attack of Transverse Myelitis. TM can represent the onset of multiple sclerosis, but she doesn't believe that will be the case (based on the timeline and how my symptoms presented). To be sure, I will go for MRIs every 6 months for the foreseeable future.
Transverse Myelitis is a rare neurological condition characterized by inflammation of the spinal cord and damage to the myelin sheath (the protective layer around the nerve cells). The damage interrupts signals between the spinal nerves and the rest of the body causing loss of sensation, movement, and bladder control. In my case the damage occurred in the cervical spine (neck) which was why I experienced symptoms from the neck down.
Learning just how severe TM can be gave me my first dose of perspective.
50% of people with TM will become temporarily or permanently paralyzed. The flip of a coin.
Knowledge is power, and with my newfound perspective of what could have been, I suddenly found myself feeling quite lucky to have had a relatively mild case.
One third of people with TM are left with permanent disabilities, such as paralysis, while another third of people are left with moderate disabilities, such as bowel issues and trouble walking. The final third recover with little to no lasting complications.
By the time I learned all of this, things had already started to improve. The numbness was receding from my legs, and all but one of my toenails was growing again. Dr. A told me that things should continue to improve, and that time is the only thing that would help.
So far, it looks like I am going to be one of the 33% who recovers with very few lasting complications.
Today, Nearly a year after the onset of my symptoms, all that remains is some mild numbness and tightness in my feet. Even my final toenail is growing again! I have regained most of my balance, and I can enjoy being barefoot again. If I never improve past this point (which could be my reality if there are any permanent scars or lesions), I'm extremely grateful for what I have gotten back. My ability to cut my toenails, run, balance and feel my legs will not be taken for granted ever again.
So why did this happen?
Although we will never know with 100% certainty, Dr. A strongly believes that the TM attack was caused by Remicade. It would be important that I avoid it and all TNF-inhibitors going forward. Thankfully by this point I had already been taken off of it because my UC had flared up.
With this perspective, I realized this was the silver lining of my flare.
Remicade had been my miracle drug.
The trade off was damage to my spine.
It wasn't a fair trade.
One UC flare and Remicade was no longer my miracle drug, so I was taken off of it.
Inadvertently saving me from 6 additional months of exposure that would have taken place before St. Mike's.
Talk about luck 🍀
*My case has since been reported to Remicade. There are no statistics about how many people this has happened to because what happened is so rare that I might be the first. Earlier TNF-inhibitors have been known to cause demyelinating disorders but never Remicade. To add some context, Remicade has been around since 1998 (25 years), and currently there are around 2 million people being helped by it worldwide for Crohn's, ulcerative colitis, rheumatoid & psoriatic arthritis, along with many other autoimmune diseases. It has helped and continues to help so many people.
Next up in My Story: Chapter 5: Making Peace With Spiders