Isn’t there a song or something with lyrics that say something along the lines of “the more things change, the more they stay the same” or something like that? Whatever it is, it is applicable to me since I last blogged in June.
I know I have said it before, I’m going to say it again now, and I am 100% certain I will say it again many times over: I hate humidity. It doesn’t matter if it is hot or cold, humidity sucks the life out of me. We recently had a day where the weather was in the 60s but the humidity was over 80% and I was dragging by 10 am (I got a good sleep as usual the night before). When you add heat to the mix it is worse, but I actually think I would prefer dry heat over cool humidity. Not that I like the heat mind you, because I don’t, but I think I tolerate it better that cool humidity, at least for now.
I’m still rocking the Tysabri infusions every 28 days, and have annual MRIs coming up at the end of this month to see how things look. Since I last blogged here my annoyance symptoms have increased (mainly fatigue and cog-fog) but at my recent neuro checkup she feels it is more symptom increase than new MS activity. The MRIs will confirm or reject that, so we shall see.
The cog-fog got to a point where my neuro referred me to a consult with a Speech & Language Pathologist. At first I wondered why but my neuro said that they do cog-fog stuff as well, particularly the new SLP they (UCONN) just recently hired. So I did the consult and the results were well within normal range so most likely the busyness and stress of life is catching up to me. The recommendation was to try to slow down a bit (as much as possible) and do things like word searches and Sudoku. Glad I don’t work 911 any more because the words “slow down” don’t exist there.
I have a consult on 10/11 with a PT that specialized in working with patients with neurological diseases. The hope is to help with loosening and strengthening my lower back as well as loosening joints. Once I get going I am fine, but sometimes getting going is a bit of a chore. My neuro thinks I might have a bit of a drop step now to, so the PT can help with that.
The new thing for me is now fully knowing and understanding what the MS hug is and feels like. That is my new annoyance symptom. For me it is like being squeezed in a huge bear hug more or less in the rib cage area, top to bottom. It feels like a strong, tight squeeze (thus the name MS Hug). It does not impact my breathing but I know for some it can impact their breathing even though there is not anything literally squeezing/giving the hug. I had it for the first time this past weekend, and every little bump into something or someone felt like being hit by a Mack truck.
So for now, it is waiting to see what the MRIs show. Assuming there is no new activity, it is more of the Tysabri until one of two things happens. I either go positive for the JC virus (JCV) or the MRIs show new activity. The plan should either of those take place is to switch to Ocrevus.
My last bit of excitement was having to battle with my insurance to cover my infusions. I had just finally transferred all of my medical care to the UCONN system but my employer then switched insurance and they weren’t going to pay for my infusions at UCONN as apparently it is more expensive there (having seen my EOBs I kind of doubt that as everything other than the Tysabri totaled 5% or less of the total bill, which is just a few hundred dollars more than what most are charged for a basic visit to the doctor). My team at UCONN said they were going to fight my being transferred and recommended that I complain and petition to stay at UCONN as well. I did, and anyone that knows how I do that stuff knows that my argument was solid. If you really want details message me privately and I will share. Long story short apparently the squeaky wheel gets the grease because I was approved to stay at UCONN until the next open enrollment/renewal (July net year), so my efforts combined with my UCONN team efforts (which included the Medical Director of the MS program at UCONN) were successful!
That’s the latest and greatest on the MS front, at least until the MRI results come back. Thanks for taking the time to read this and check in.
My MS Journey 2016 