I’m feeling really anxious and can’t seem to use any of my usual tools to keep myself calm. Yes, I’m anxious about the election, of course, but I think that’s just adding to some very real health anxiety I have.
I finally saw the neurologist at UT Southwestern today and that was everything I’d hoped it would be. She told me I was right to trust my intuition about not taking the disease-modifying drugs, for one thing. As she put it, they’re serious drugs with major risks and side effects, and too dangerous to take if you’re not sure that you have MS.
She also praised me for how well I had educated myself, even commenting that one of the supplements I take (based on the results of a study’s findings) is one that she recommends that her patients take. By contrast, my previous neurologist said the supplement was “useless.”
Just like the difference I experienced between doctors in small-town Michigan and Fort Worth, I discovered that doctors at a nationally-ranked facility like UTSW really are that much better.
She came to the tentative conclusion (pending the results of some tests she ordered, including some genetic testing) that I most likely have something like CADASIL, which I’ve mentioned before. I suspected I had some type of rare genetic disorder and she stated the same thing. She thinks I have a very closely related condition called CARASIL, which means that it’s caused by recessive genes instead of the dominant ones that cause CADASIL. Essentially it means that when my parents’ genes came together to create me, I just got a particularly bad luck of the draw.
I’m trying to figure out how to put this in the most not-boring, non-technical terms possible. Long story short, the disease I have causes early strokes, is progressive, and is so rare that only 50 cases of it have ever been discovered worldwide. Of those 50 or so cases, most people only live 10 years after diagnosis, but some have been known to live for 20-30 years. While I was on the right track in terms of thinking I had some kind of weird genetic disorder involving my brain, I guess I didn’t realize how it would feel to finally get a more educated answer.
But—and this is a big “but”—getting the validation that I was likely right about my diagnosis provided only a short-lived feeling of vindication. My feelings have quickly faded into anxiety and even outright terror over the reality of what I have. While this may be an answer and that’s its own type of relief, it’s actually a fucking terrible answer.
There’s nothing they can do to stop it. All I can do is try to be extremely aggressive in trying to prevent that next stroke. On that note, she reviewed my hospital records from my last “MS relapse” in 2017 and said she didn’t understand why the hospital I went to said they couldn’t tell if it was MS or a stroke. She said that had I gone to the UTSW ER instead, they would have for sure said that it was a stroke and likely would have looked into CARASIL/CADASIL then, given my age and the appearance of my MRI. Sigh…this just makes me want to get out of the suburbs even sooner.
More than just fear, though, this has really shattered my denial. The muscle spasms in my legs are getting really bad, a fact that I’ve been trying to ignore for months. The neurologist was surprised that I wasn’t taking muscle relaxers for them given how bad they are (which I’ve been prescribed but excessive sleepiness is my #1 symptom and the muscle relaxers just make me too sleepy.) When she asked me if I had any pain today, I said no, even though my legs are pretty much constantly rigid with spasms. I guess I’m just used to it, so it didn’t seem remarkable. The pain is just background noise, like static on a radio in the distance.
But what if I really am running out of time in terms of my life? I don’t feel like I am and it’s already been 7 years since I was diagnosed. So I probably won’t be one of the ones who only has a 10-year survival rate post-diagnosis. But even if I have 25 more years, that’s still dying at an earlier age than average.
There’s also the fact of the disease’s progressive nature to consider. It’s not like you’re just merrily going along and then you just happen to die at a young age. No, it comes with dementia and a loss of emotional control and incontinence. I very well could end up the youngest person in some poorly-run nursing home.
I’m trying to still keep a positive attitude about this, even though I’m frankly scared as hell of what could happen. Right now that “positive attitude” comes down to what’s little more than a naive denialism. Maybe in addition to living longer than the average person with this disease, I might also progress more slowly. Maybe I’ll never get that bad at all. For now, denial and sucking it up when I’m in pretty much constant pain are my coping mechanisms. I hope they’ll be enough.