After the results of my ELISA test came back positive I was not entirely sure what to make of it. Then, the next day, I got a call from my doctor’s office; they left a message (as I missed the call) telling me I needed to discontinue Tysabri and come in to choose another treatment as if I would drop dead immediately
upon receiving one more dose. This freaked me out and started me on a coarse of extra-strength stress as I called my old Neurologist’s office and emailed him to ask for his opinion. While waiting for a reply I talked to others on Facebook who were JC positive. When I heard about their “levels” I thought to myself “hmmm… my current doctor is telling me I need to stop because my JC levels are yet these people have higher levels than I and their doctors were not freaking out like mine, weird…” but still I was stressed. What did my level of 2 point something mean? Was it really so serious? What was my PML risk factor now?
Well, let’s fast forward to today. Since I have been so fatigued the last few days (most likely do to the stress) and coffee was not doing , I decided I was going to take a Nuvigil. I did not like this medication as I felt that in the past it was giving me heart palpitations and every now and then I got the crazy migraine people often complain of. It was not worth the energy at the time so obviously if I was willing to take this medication again (despite the risk) I was getting desperate. I took one 150mg pill at 6:00am and immediately started a log on my phone so I could look back and see how it effected me.
It’s about 2:30pm right now and still I feel well. I don’t feel like passing out from fatigue, I have no headache, and my chest feels fine. If I had to guess, the fact that I am taking Klonopin (a benzodiazepine) might explain me not getting heart palpitations? Or maybe that horrid feeling in my chest was just my myoclonus which was not even addressed at the time I last took Nuvigil. The headache bit is probably just luck unless all my hydrating last night really made a difference but I can’t be sure because I don’t know Nuvigil causes headaches? Either way, I had way more energy this morning, I still feel awake, I have been thinking sharper, I feel good. Which leads me to this next bit.
This morning my mind was and everything seemed so sharp as though the cognitive fog had been lifted from my head. So after I got back from my walk this morning I decided to continue my research on the JC virus and how likely I am now (compared to before I was JC positive) to develop PML. All week I have been looking into this and never did I find a single answer. 10 minutes on the laptop today and I had my answer. It’s nice to not have 0 visibility in your mind! I came across a page on the actual Tysabri website that told me exactly what I wanted/needed to know. You can find it by clicking HERE