I read this woman’s blog entry about learning that she had MS, being terrified, and then continuing on with it, almost like nothing had happened as her symptoms abated. It made me want to write a bit about how it happened to me, too. So I did.
The film from an MRI of your brain looks like a brain. You can see the brainy shape of it, just like a biology text book or a scene from Grey’s Anatomy. And there was my brain. With a big white blob in the middle of it.
The neurologist had put the films up on a light board at the beginning of my meeting with him. And then he started talking about… stuff. All I wanted to talk about was the big white blob in my brain and I couldn’t really listen to him talking about treatment considerations and symptoms. He eventually got around to the big white blob and admitted that it was a lesion. In my brain. And then he said “I’m not sure why someone else hasn’t given you the diagnosis already.” Which reminds me that the neurologist in New Jersey had said that she was putting the diagnosis down as Multiple Sclerosis, but only because she “had to put something.”
The back of my neck started to get really hot. Just like when I find myself in the middle of a break-up conversation.
And that’s how I found out that the previous few months of dizziness, double vision, pins and needles, and exhaustion were not just in my head. They were real. And stemming from a chronic debilitating disease called MS.
I went to visit a dear friend in Seattle for Thanksgiving 2006. While it had been planned as a long weekend of girl times, excessive eating, and booze, all I wanted to do was sleep. I took naps. I wanted to sit down or just hide out in the car when everyone else was strolling around town. It might just be that I was too out of shape. There had been too much smoking. Too much drinking. Maybe I was coming down with something. But it was weird.
Then, home again, I started having a funniness about my vision. It seemed oddly fuzzy and not quite right and my eyes just felt tired. I chalked it up to stress and tiredness and maybe just the end of my reign of better-than-perfect vision. But it didn’t get better. In fact, it started to get worse, until it became clear that I was actually seeing double. I became increasingly nauseous on the bus as the weirdness with my vision started fucking with my general equilibrium. I started feeling dizzy and unsteady. I unconsciously reached out for walls and something solid any time I was walking around.
The double vision got so bad that I got into the habit of closing one eye all the time. Like a perpetual wink.
I had a PPO at the time, allowing me to just go see any doctor without a referral, so I started making appointments. My family doctor agreed that something was wrong and referred me to neurologist, but I couldn’t get in there until after the new year. In the mean time, I saw an eye doctor who said that something was definitely fucked up, but that there was nothing wrong with my vision.
Back home in New Jersey for Christmas, I saw an Ear-Nose-and-Throat doctor and a neurologist who gave me a bunch of test that watched my brain while I looked at flashing and moving lights in the dark. They also gave me a test that involved blowing toots of air in my ears to simulate vertigo, a sensation so unpleasant that I cried in the car on the way home while the effects lingered indefinitely.
That was the doctor who created a report for me to take back to San Francisco with me and who said that she was putting Multiple Sclerosis as the diagnosis because she “had to put something” until it was confirmed. If those tests weren’t for confirming it, then I have no idea why I had to have them.
So back in the Bay Area again, I got the scheduled MRI, which is long and boring and weird, but not terribly upsetting. Armed with these pictures of my brain (which I refused to look at) and the report from the New Jersey doctor (another thing that I would not look at) I went for my long awaited appointment with the local neurologist with my friend Jessica.
By this time, it had been two months since the initial symptoms started and they were pretty much all gone already. I was weirded out and stressed, but the double vision was clearing up. The pins and needles in my hands and feet were mostly gone. I didn’t feel like puking on the bus any more.
So while the news from this doctor was incredibly scary and upsetting, I was actually feeling pretty ok.
Two days later, I lost my job. But that’s another story.
This story continues with the status quo. No more symptoms. So far so good.