I have a rare condition called transverse myelitis. It’s a sudden onset, rare nervous condition in which half of my body, from about the midsection down is partially numb. This causes various digestion issues for me, and other annoyances. I’m lucky in that I wasn’t paralyzed when it happened. My life has been affected by this in a real way, but I’m still able to walk around fine and don’t feel at all disabled.
I feel like this probably happened to me because of a vaccination I received in college. I got some scary ones when I went to live in Ecuador for half a year as part of a study abroad program. I got typhoid, yellow fever, and dengue vaccines.
It all started for me when I was traveling through Mexico with my friend Elijah when I was about 23. We had taken the Greyhound down to Tijuana from Portland, and from there took a local bus through Baja to the very bottom. There we hung out and then took a ferry across to Mazatlan on the mainland. We then took another bus through central Mexico and explored the silver cities such as Zacatecas, Guanajuato, and San Luis Potosi. It was in Zacatecas I believe that I experienced my first symptoms.
We had gone out the night before and had drinks and smokes with some locals, spoke Spanish, and just had fun. My Spanish is always good when I’ve had a few drinks. We walked back to our rented room and passed out.
I woke up the next morning, and I couldn’t see very well out of my left eye. I could still see, but colors were blurry and muted, and it just never got better.
I didn’t know how to take care of myself and was never taught to by my parents. So, it wasn’t for many years that I even investigated what happened to me. I thought, well, something happened to me, but nothing else got worse so I forgot about it.
Eventually, I saw an eye doctor in Alaska because I had free time and health insurance and thought I’d find out what was wrong with me. He did a scan of the back side of my eye using some cool, new machine I forget the name of. And what he discovered was that the optic nerve was damaged. He said that was an early sign of multiple sclerosis (MS), but that it didn’t always lead to MS. That was the first time I’d heard that potential diagnosis and I was shocked and a bit scared.
He said there’s nothing he (or anyone) could do to fix it, and getting glasses wouldn’t help me. He just said, that’s something I have to deal with now. So then I didn’t really do anything more with it.
Six years later, I was living with my (then) girlfriend in a condo in California. I went to sleep one night, as normal a night as could be. I had a frightening dream that I was laying in bed and up in the corner on the wall were two giant cockroaches, crawling slowly, and staring at me with their beady eyes.
I woke up after that dream and lay there for a few minutes digesting my dream. Then I decided to get up and immediately noticed that the lower part of my body below my midsection was partially numb. I walked around and worked like normal and the numbness never went away. I started finding that walking was ‘weird’. My right foot felt like I had a rock at the bottom of it all the time. At first I thought it was just the right leg and foot, but then I started to notice the problem on my left side as well.
I bought expensive health insurance because I didn’t have any and then went and saw a neurologist. He said it sounded like MS. My conversation with the eye doctor came back to me abruptly and I felt afraid. He wanted to perform a spinal tap. I didn’t like the idea. I talked to another doctor and he explained the procedure to me and told me it’s a fairly safe procedure and that he would do it. So I did it.
I was terrified to do it, but like most of the tooth surgery I’ve, it didn’t really hurt. I mostly just felt some strong pressure on my lower back briefly. Then it was over.
The results indicated exactly what the doctor was expecting. He then sent me for an MRI. Two hours inside the tube wasn’t as bad as I thought. I even got some meditation and good thinking done in there. The results of that too confirmed what they expected: lesions in the spine and brain. Yikes.
The doctor was pretty confident I had MS, but didn’t formally diagnose me. I didn’t want to believe it. He said he recommended I take some anti-MS drugs. I didn’t and so far haven’t had a recurrence of any symptoms, other than the persistent numbness, for seven years.
When he suggested I had MS I did my own research and discovered it was much more likely I had an anomalous Transverse Myelitis incident. I found that very rarely patients will get optic nerve damage like I did and then have a transverse myeletis incident like I did and won’t develop MS symptoms for the rest of their life. It’s like a two-fer that just happens to some people. I hoped to God that was me.
I also read how some studies in Norway found that people who got transverse myelitis and then absolutely pounded the vitamin D3 and didn’t get MS symptoms within two years of the myelitis incident were unlikely to ever get full-blown MS. So I took 10,000 IU a day for years, and I never had any more incidents.
I still haven’t. But I saw a doctor recently who said my vitamin D levels were way too high, so she said that was also dangerous. She had me come off of the vitamin D3. But it’s been so long now, I think I probably took it long enough anyway, and I haven’t had any more MS symptoms. Having said that, I’m still numb. My optic nerve is still damaged. I can walk and everything, it’s fine.
But, I did notice something strange lately. I started running again and I ran for a mile or two and then increased that to four miles. My legs were absolutely spaghetti after that. Tired yes, but also, like, I could literally not lift them and had to drag them along the road practically – I barely made it home.
That scared me but I kept running and now I’m able to do the four miles without so much dragging, so partially perhaps it’s just lack of use of the muscle.
So that’s my journey so far with that. If you’ve had similar experiences I’d love to hear from you!