It’s that time again to update everyone on my latest visit with Dr. Okai in Dallas! She is the specialist that I go to for MS.
This was a short/quick trip with just my wife and I so we didn’t do anything fun like we try to do when we take our son and my Mother-in-law. We drove there (6 long hours) on Sunday and spent the night with a dear friend. Then drove back (another 6 looooooooooooong hours) on Monday after my appointment and a little shopping! Gotta have shopping time!! Haha
I was expecting my appointment this time to be more in depth since I was coming close to the 24th infusion of Tysabri. Which, as I have mentioned before, after 24 infusions the risk of PML, the brain infection, rises! So I knew there were going to be discussions about my treatment plan. Continuing on with Tysabri and accept the risk or try something else. Especially since I am positive for the JC virus.
I had played out this visit in my head over and over with every possible recommendation she may have. I really didn’t expect her to suggest staying on Tysabri since any time I mentioned that I wanted to continue on it due to it having worked so well, she has always seemed …not really in favor of it with my JC virus status. So I had worked out all of my possible options and my concerns for each of them. I also decided to go in with an open mind not stuck on what I wanted and try to hear what is best for my health! I woke up Monday morning feeling ready for this appointment!
When we arrived, and got to that part of the visit, it was nothing like I expected! Her recommendation was to stay on Tysabri since it is doing so well but to spread my infusions out a little further. Now I will be going every 6 weeks instead of every 4 to limit my exposure to it. I can live with that! We are going give it about 4 months to see how I’m doing with that and if I can handle the lengthened time between infusions! I don’t have to go back to see her for another 6 months!
Other than that it was a pretty uneventful appointment! I have been doing well without any problems since the last time I saw her so that’s good!! I didn’t even have a million questions like I normally do! Haha I just had to go have blood drawn again and also received orders for another MRI, which I’m in the process of scheduling now.
I will have another blog soon about some supplements that I started taking and an update to how those are working! But until then… Thanks for reading!!