Wednesday, August 05, 2009

The rain, the park and other things from today

My son A makes videos and posts them to YouTube. He is very proud of his subscribers. I love his videos, and even more, I love the way he says "subscribe" and "subscribers". The accent is on the first syllable. "Dad! Bapod is one of your SUBscribers!"

Today, A and I were playing the Incredible Hulk Playstation 2 game. Well, he was playing and I was his audience. The game, like the Spiderman games, is set in Manhattan, and goes into a very refined level of detail in terms of buildings in the city, streets, etc. He was trying to figure out what the name of the building was that he was climbing, and he mentioned the World Trade Centers. He saw a look flash across my face. And before I could say anything, he said with certainy, "Mom, they still have all the buildings in here, even if somebody has knocked them down."

After that we played Rock Band, which I actually do play. Normally I sing and he plays the drums. There was one song in particular that he wanted to sing, so we switched. "Alive", by Pearl Jam. Any crazy idea I had that maybe I had some musical ability is demolished anytime I try playing the drums in Rock Band. Even on easy. He sang 1000x better than I played. But we did not have a full-on Rock Band FAIL. A Rock Band FAIL is a terrible thing for one's morale.

So, I went to see the New Neurologist today. New to me and Anschutz. First of all, today was his first day on the job! I explained to him how the imaging system worked when he was trying to compare new MRI to previous MRI. That made me feel competent, and it was one less question he had to go ask "Becky".

I had an enormous amount of trepidation about the appointment. Breaking in a new doctor is always a challenge, and especially when you have 10 years of history with MS, medications and all that to explain.

It worked out so much better than I could have imagined. I sat there while he counted 52 lesions on my brain. My understanding is generally they stop counting after about 50. I think when I was first diagnosed I had 8. We went back and looked at the MRI from a year ago, and he counted 54. Now, that made me feel good. Between Tysabri and the diet, I am not getting worse. I knew that, but it feels good to see it on the MRI. This is my second year with no new brain lesions.

I know that it is all much more complicated than the # of lesions, but an increase in lesions indicates an increase in progression, and that's bad. No increase in lesions, and no active lesions is good.

He met with me for about an hour, which was surprising. He suggested I switch out my antidepressant from Prozac to Wellbutrin, which dr.'s have been telling me for years. Reasons being that Wellburtin doesn't mess with sex drive the way Prozac does. Prozac is considered a much 'heavier' drug, in terms of energy in the body. Wellbutrin allegedly has a lighter touch. The past few years, I haven't wanted to mess with it. I have enough other stuff going on. But this time I agreed. I asked him "if I start having rage attacks in two months, who should I call?" He said "You should call me". I said, "Are you sure that's the relationship you want to have with me??". I made him laugh several times, which is always my barometer of a good neurologist :-)

We had a long talk about Tysabri. In the end, we both agreed that the best course is to continue on it. I'm at the two year mark, and there is no data about what happens to patients beyond the two years. His experience at his "previous institution" (in Boston) was helpful. He was part of the team that studied Tysabri and what happens when you take a 3 month vacation from it. The results showed a rebound effect, and the patients were miserable and had exacerbations and progression. His conclusion was there is not a compelling reason to take Tysabri vacations. With everything they know now, if you are like me and have had no problems, with very good results, staying on it makes the most sense.

I agree. When I was on Copaxone, Rebif and Novantrone, MS kept on progressing. I am also much more 'compliant' on Tysabri - there is no down side for me. No self-injecting, no bruised abdomens, no added depression. The addition of following an MS Diet seemed like a deal clincher for me. I think it is the diet that helps me with my day to day existence.

He supported my diet choice although cautioned me against over-restricting. At the moment, I don't know how to do that.

He answered a few questions I had about Tysabri. He asked me to see him every three months. I almost laughed at that, as previously, it was impossibly to see a neurologist every three months in that clinic! I should probably book about 10 appointments right now to make sure that continues to be true.

One of the best things that happened was he arranged for me to have my Tysabri infusion on Friday. The infusion center wouldn't let me have this week due to me being on an antibiotic. He cleared it for me, as my infection is gone. Woo! I felt an ENORMOUS amount of relief. I had no idea how much that had been bothering me. I felt better walking out of the hospital than I have in two weeks. It was as if I made it through the appointment with no Neurology FAIL. I don't know that that has ever happened before. I usually leave the appointment with some bad news one way or another. I'm just going to take a moment and appreciate that.

Dr. Miravalle, here's to a minimum of full-on FAIL's.


Paul O'Brian said...

Yay positive neurologist appointment. That sounds almost like a best-case scenario. I'm so glad for you.

Rigsby said...

You are an artist when it comes to writing. Elegant. I'm just freakin green with envy.

Oh, Your rockband fail screen features 'i think I'm paranoid' by Garbage. I love love love that tune. I met Shirley Manson at a party in Madison about 11 years ago. Mmmm.

trrish said...

mmmm, Shirley Manson...

Hooray for positive feedback :-)