My first Tysabri IV (read this state of my health blog post from April for details) was originally scheduled for 13th May. I had to cancel it because I was sick and the MS nurse and I rescheduled it for today. I didn’t spend that much time thinking or worrying about it in advance, because I’ve did all of that back in February / March. I did – subconsciously ? – try to distract me yesterday though, when I started to fill my virtual bookshelves at Goodreads. I’ve managed to „transfer” approximately 15% of my books, which means the whole project will keep me busy for a while longer. I’ll also try to include the date, when I read it, which means digging into blog archives and the book reviews I kept on my site in 2002 – 2006. It’s fun to revisit this all and to remember reading these books. And yes, it’s very distracting from any worries that would have maybe crossed my mind otherwise.
I had the IV without any complications this morning, but at the first one there are no complications to be expected anyway. I don’t worry to much about the next one yet either. I’ll just have to wait and see and there isn’t anything I could do to prevent any complications either, so what’s the point in worrying? (That’s the unusually rational part of my mind talking)
When I lay in bed last night I once more took stock about my neurological status like I already had done weeks ago, after I decided for this treatment plan. Now I just have to pay a closer attention to my neurological status to be on the safe side regarding the PML risk. But I’m determined to take the time every week to kind of do a check-up on my neurological status and to not let it scare me too much the rest of the time.
There also is a new test available for Tysabri patients to find out if they even have the JC virus (which causes the PML in patients with immunodeficiency or -suppression.) The JC virus itself is not dangerous for a normal healthy person and about 70-90% of the population in fact have already acquired it in their childhood or adolescence. With this new test Tysabri patients (and their doctors and nurses) now can find out if they are JC virus free, which of course would reduce the risk of PML immensely or if they are among the 70 or more % who still have to live with this known PML risk. And of course there is a catch, because even if someone doesn’t have the JC virus now, the risk of getting infected later on, but still the PML risk is reduced for a while and that would be a wonderful thing to know.
I’ll have that JC Virus test done on Monday and a few days later I will know if I’m among the lucky ones with a reduced risk of PML. Another one of the: I’ll just have to wait and see moments, I guess.
Like I mentioned above the it all went ok with the IV this morning. From what I read about possible side-effects from the IV I expected a headache and fatigue and I experience that right now but only to a small degree. It might also be caused by the change the lack of sleep and the stress I had at work earlier this week. I’ll pop in another aspirin now and will try to go to bed at a reasonable hour. And until bedtime I will spend my time with Season 1 of the „Gilmore Girls” (yes, I know I’m incredibly late to that party!) and with continuing with the Goodreads project.