derogatory: (Default)
read this or you're gay ([personal profile] derogatory) wrote2017-06-28 10:31 am

alternate title; a year of not learning how to spell "sclerosis"

So a year ago I went in for an MRI of my neck. I'd had really intense neck pain for a few months, seen GDs, orthopedists, chiropractors, no relief. The MRI was to deduce if there was a slipped disk, or some kind of damage. After the MRI, the spine specialist called me to say I needed come back ASAP for a brain MRI and a meeting with a neurologist. The nerves around my spinal column showed irregularities that were indicative of MS.

When I didn't say anything right away, she asked "So what do you think? How do you feel about that?"

What this post contains: an extremely simplified explanation of what the disease is, how it physically affects me and the steps me and my doctors have taken to minimize its effect on my life over the past year.

What this post doesn't contain: an emotional examining of my coming to terms with having a chronic illness. "How do you feel about that?"

I keep a "Question a Day" journal that asks you the a different question each day over the course of five years. I'm on year three and it's been really interesting looking back on it. Lots of huge meltdowns turn out to be nothing when I look at them a year or two later. Lots of doors I assumed were closed to me were actually open. Lots of good situations ended up going kinda shitty. I mention this because last year, in late spring/early summer before my diagnosis, there's a really weird pattern in my journal entries. Whenever questions ask if I'm worried about something, I wrote about feeling like I was sick in some listless intangible way. It's weird bc at the time, I was dealing with a lot of pain but nobody brought up the possibility of me being sick as the root cause. I didn't have any reason for this underlying fear that there was something legitimately wrong with me. I just kept repeating that I thought I was sick.

I didn't notice this until I looked at last year's entries, and I don't have an explanation for it. Maybe my subconscious was trying to tell me something or maybe I've always been overly dramatic.

MS is a really weird disease. My understanding of it is that your immune system randomly starts attacking itself and sporadically fries parts of the nerve tissue in your spine and brain, leaving scars. Luckily the brain is pretty elastic and can usually heal itself. But if you have enough attacks, with enough scarring over a particular area, the brain stops being able to heal itself. So whatever that part of the brain controls- it's gonna have issues.

This leads to really crazy things like MS patients spontaneously going blind... before their sight comes back after a couple weeks. The brain got damaged in the part of it that handles seeing, but it eventually was able to fix itself. Or other people who went blind and never got their sight back. People lose mobility, get it back or can never walk again. These are all real possibilities and there's no way to know when it will happen, how long it will last, how bad it will be.

I have a wedge of a scar over my left eye. It's a part of the brain that deals with motor functions, eyesight, stuff like that. It's been there since the first MRI, and it was there when they scanned my brain last week. The doctor pointed it out and said, "You'll likely have that for the rest of your life."

Right now I don't have symptoms like most people. I don't get numb hands and feet, I don't have trouble with my balance. No blurry vision or headaches. I did pee my pants a couple times in elevators, but those stories are a lot funnier when they're not connected to a degenerative disease. Honestly, the whole process of being diagnosed this early is a success story; it's a coincidence they spotted the delineation on my spinal cord when they did, so that's why I'm asymptomatic. If I hadn't gone in for neck pain I might not have got treatment so early. My neck still hurts literally all the time, but the degenerative disease takes precedent.

I'm on some pretty intense medication that's designed the limit the flares. The less flare ups I have, the more likely there won't be overlapping scarring and permanent damage. The medicine I'm taking is part of relatively new set on the market with the highest success rate at stopping MS attacks: 40%. Thankfully, there doesn't look like there were any new scars from 2016 to 2017. The medicine is doing its job. But if it ever stops, there's nothing else we can do. All other medication has a lower success rate at stopping attacks. It'll just be maintenance while my body deteriorates. But maybe it'll keep working forever.

So it's been a year of a lot of maybes. Maybe it'll never get worse, maybe you'll be asymptomatic forever, maybe you'll go blind. Maybe that tingle in your hands is nothing, maybe it's your immune system attacking the nerve lining of your spine. Maybe your vision is getting worse with age, maybe it's the MS. Maybe you've got nothing to worry about, maybe you won't be able to walk tomorrow.

How do you feel about that?