I’m writing again this summer despite urgest from medical professionals not to do that.
Part of what I’m hitting on, and this really started as I was languishing in a casino hotel in Biloxi, is a track of thinki9ng about accuracy in language.
I subscribe to several email lists the focus on vocabulary. I don’t know that I can count the number of times where I’ve written something, then, on re-reading, changing a single word really doubles the effect of the sentence; one word makes a big difference.
Part of that was a flashback to something I’d posted in the Virginian Pilot comments years ago, where I initially typed that I can sympathize with an article subject. No, sympany wasn’t really the correct word. Yes, I was sympathetic, but I was also empathetic, as the subject’s conditions were very similar to the ones I experience with MS. .
No, I don’t understand exactly what the subject is experiencing. But I do understand better than someone who doesn’t experience the same symptoms.
So I started down on the number of human emotions. Is there a defined number? Hmm. Yeah, Berkeley has a list. Discuss with a psychologist, and the take is different. Yes, the words are different, but they’re really the same emotions. Is there a big difference between nervousness and general anxiety?
I don'[t know, and that’s caused me to really rethink what I’m doing, in this binge.
Things have calmed down a lot, I think, in the past couple of weeks, professionally. Medically, on the other hand, I’m still in a bit of a state of flux. I don’t know if I wrote about my anxiety about starting Tysabri back in 2015, but I was scared to start it.
After being on it for a while, I’d gotten accustomed to the medication. The highs and lows were certainly less-pronounced than they were early in my time on it, and I wasn’t worried about dying every time I took it.
Some of the dangers that had me so nervous at the start were surrounding PML.
They fiddled around with the dosing schedules, etc., but THE SCIENCE, (and hattip to Dr. Fauci at Georgetown…). They instituted an hour-long post-infusion observation period. They implemented every-four-month blood tests to see if you had antibodies to JCV, the observation period was cut to 30 minutes, then they were going to start letting it be administered via home infusion.
I was scheduled to start home infusion with my next infusion on 1 August. The weekend before my last infusion, I went to a facility for a JCV test. Though I didn’t have an appointment, and was there on a walk-in, it was pretty uneventful. Tuesday I went for my last Tysabri infusion at the place I’d been going for about a year and a half. Nothing terribly interesting to report, though I was noting some vision weirdness here and there.
But I was preparing to travel down to see my mother, a bit concerned about my employment status, but ready to travel and do the things I’d intended to do on vacation.
I got the information back on the blood test a week after the test, and three days after the Tysabri infusion.
Positive.
Oh fuck.
What to do now? (And please excuse the foul language; I’m trying to watch my use of worty dirds….I think that you can actually be more effective without using “gutter language.”)
I got in touch with my neurologist, and scheduled an appointment for when I got back from Biloxi. My next DMT is Kesympta.
We’ll see where it goes.
I am feeling better than I was before I went to Biloxi, but I’m still not okay. My eyes are weird. I’m having trouble sleeping.
I need to get an MRI to see if any damage has happened.
Thankfully, it seems like the possible work issues are resolved. We’ll see.
But if there’s something you’d like to see me write about, please email.