So I had two days of feeling OK, by which I mean not miserable haha… But now everything feels out of whack again. I think it’s because on Tuesday I saw my neurologist which meant leaving the air conditioned house into triple digit weather… I also ran a couple errands on the way and I think the heat just wiped me out but no matter how much I rest it doesn’t seem to affect the rate at which I recover. It take one day to screw everything up and then weeks to fix it; I have said before that it is like breaking a plate, it take two seconds to drop it and watch it shatter into a thousand pieces but then it takes days or weeks to glue it all back together and even with all the pieces in place it will never be the same again. After a relapse you never heal 100 percent; your “baseline” always changes just a little bit and over time your baseline gets progressively worse. That is the course of this disease…
Aside from fatigue my vision is deteriorating… Not just my dizziness (or oscillopsia) but my ability to see clearly. Everything is blurry but it’s weird, it feels “out of focus”, like when you hold your hand out and focus on it; everything in the background gets blurry and if I strain my eyes I can make it focus until I relax and then… blurry again. On top of that, my doctor was finally able to see something I always knew was there; some sort of horizontal nystagmus (rapid, involuntary eye movements) with a saccade issue. I forget what he called it, I forgot to bring a pen with me. Anyways, saccades are like when you eyes rapidly shift (or jump) to focus on something new. I also told him that I have been noticing something new; it’s getting really difficult to read because as I start reading a paragraph my eyes will skip ahead or behind or even down and up randomly instead of smoothly moving from left to right. So reading text takes a while so that I can keep trying to pick up new segments of a sentence and then piece them together to make a coherent sentence, does that make sense? He called this something but again I forgot what so I emailed him and hopefully he will remind me what he said it was. It is so annoying! Trying to write is really difficult because of this as well!
I also noticed that when I type my face is getting closer and closer to the keyboard, even when my vision is not all blurry because it sometimes seems fine and then randomly switches to blurry. Because of this I can’t decide if I need new glasses or not? At the same time I think I need one of those keyboards that are split at that weird angle because typing has been hurting my wrist, not sure why that changed but between my vision and the pain in my wrist typing has just been rather unenjoyable so add that to my utter lack of motivation to do anything? I have totally been falling off the radar.
It scares me, wondering how much permanent damage I am experiencing because of all this? How much is going to “stick around”? My second infusion of Lemtrada is in about 2 months (September 26-28) and from what I read in the 5-year clinical trial data, most patients seemed to not really start seeing actual improvements till about 3-5 years post Lemtrada… So I have a while (I am only about 10 months post the FIRST Lemtrada infusion)… It feels like it has been so much longer, time is flowing so slowly for me.
After my second Lemtrada infusion I will be doing Ocrelizumab, which is supposed to be FDA approved and available towards the end of this year (2016). I am really hoping to start seeing some improvements in 2017 because 2016 just really sucked for me and I am not ready to accept this as my new “normal”. I really just want to sleep the days away till then but even though I am always exhausted I am never exhausted enough to fall asleep once I lie down! Miserable!
Oh yeah, I started taking 8,000 IU of vitamin D a while ago because we had checked my levels a long time ago and they were really deficient so my doctor put me on 4,000 IU a day and after testing again I was still pretty low so I upped it myself. Now I am in a pretty good spot, 79.8 and the normal range is 30-100. I don’t think I really feel any different but I figure it’s normal now so if low vitamin D was affecting the course of my MS before then maybe it’s better now?