Wednesday, September 25, 2013

THIS IS MY 1ST COLUMN: MS...What a Strange and Random Disease

Tony Bodmer, Columnist,
My name is Tony Bodmer and I am 34 years old.  This is my 1st Column!
I'm looking forward to writing more here and hopefully educating some people about MS.  I know I didn't know anything about it til the day I was diagnosed and there's too many people out there who are just not educated on what MS is. I was diagnosed with ms 9 years ago when I was 25.  The first 5 years were pretty bad until I was referred to an MS specialist by my neurologist.  She finally got me on a med that actually worked and, it's kind of leveled off now. I was diagnosed right when tysabri came out for the first time.  I had one infusion and three days before my 2nd infusion, it was taken off the market.
So I went to copaxone.  It seemed to have the least side effects from what I read.  The first few
months were great as I never missed a dose.  Then I got tired of having to give myself a shot every single day.  I started missing shots every once in a while until I started missing weeks at a time of shots.  I had an exacerbation when my neurologist said it was time for a new drug.
I went to betaseron and was so excited to only have a shot every other day.  It went well for a few months until I had another exacerbation.  That is when my neurologist referred me to the MS specialist.  She gave me 3 med options, all of which were chemo drugs.  I went to see my neurologist again after I saw her to see what he thought of what she said.  His response to pretty much everything she said was "Tony, I'm not familiar with that."  I chose the drug rituxan and Dr. Hawker became me full time neurologist.  Before her I was having 3 or 4 exacerbations a year.  After her and the rituxan, the exacerbations stopped.  I haven't had one in almost 5 years now.

 Dr. Hawker was only comfortable keeping on rituxan for a few years and then, as she put it, "Who knows what else will be out by then."  So after 3 years, I stopped rituxan and gilenya, the first oral ms drug was out.  I jumped all over that one.  Unfortunately, Dr. Hawker left her practice to go work for Eli Lilly, the pharmaceutical company, and I started seeing the neurologist who took over for her at Ohio State.  He's not much older than me and I'm happy to have a neurologist who isn't gray haired and looks like he will retire in 5 years.
When I was first diagnosed, I heard a doctor talk about how important it was with ms having a good medical team you were comfortable with.  I have the best PCP and neurologist I could ask for.
Other things about me, besides ms are I love watching baseball and football.  The Reds and Bengals are my favorites as I've lived in Cincinnati my whole life.  I remember the last time the Bengals were in the Super Bowl in 1988 when I was in the 4th grade and the last time the Reds won the World Series in 1990 when I was in the 6th grade.
Music and movies are also a big part of my life.  My favorite band is Cake and while I have many favorite movies, if I had to pick one it would be The Shawshank Redemption.  Since MS came along, I've really gotten into movies with hopeful messages, like that one.
Until next time!