Saturday, February 25, 2006

An Rx Interlude

Like many, my experience with MS drug therapies doesn't provide reliable information. At best, there are clues.

Since Fall 2005, my rate of MS progression has increased. In April 2005, after consultation with my neurologist, I came off Copaxone since it did not seem to be slowing progress of the disease. We decided to try Rebif. The Rebif reaction made my MS worse as well as made me sick. It seemed like I would have the flu for an indeterminate time. I stopped taking the Rebif.

During the summer, the MS was stable and perhaps improved. However, the last four months have become increasingly difficult: legs more jelly-like, a sudden loss of postural balance and marionette-like folding to the floor (once early in January 2006), and over the past few days, my right leg feeling painfully strange and cold.

My walking is severely compromised. On a recent trip to Denver, I used a wheelchair to get around Denver Botanical Garden and Denver Public Library. For walking I use a hiking pole wherever I go.

I do tai chi daily without much difficulty although it requires special mindfulness. I continue teaching tai chi several times a week to people in special needs situations.

Comparing rates of progression, it is clear to me that my MS has progressed faster this past 10 months off medication than over the previous year on Copaxone. The cataplectic-like event, the painfully cold right leg, increasing heaviness of my legs and loss of surface sensation, and the jelly-like legs strongly suggest some change in regimen.

After a recent consultation with my neurologist, I learned that there was reason to believe that Copaxone may also repair nerve damage (www.newswise.com/articles/view/516122/?sc=rsmn) . So, we agreed that I restart Copaxone.

1 comment:

Unknown said...

Hi Joel,

I found your blog to be very interesting, I am a 23 year old student trying to learn thi chi. I can sympathize with the problems you are facing and I know you are a strong person to deal with these problems. I just wanted to leave some feedback to let you know that this blog is cool and I found your stories interesting and helpful. I am trying to get my blog going, as I know it is a good outlet for personal creativity.

Thanks for the blog!
John B
swizzmagik@gmail.com