Monday, October 3, 2011


When I was diagnosed with Multiple Sclerosis in 1999 I had to scour literature to find the answer to my biggest questions: what the heck is Multiple Sclerosis and what is in store for me now/next/tomorrow/later on?  The internet and advocacy groups online became the greatest resources for this scared Captain serving in Wonju, Korea.  I had to understand what was happening to my body and I had to make decisions about what to do next.

I stumbled along.  I was lost and felt alone and afraid.  I had some support but most of my decisions felt like I was throwing a dart while blindfolded: where it will go was anyone’s guess.  Sure, there were some setbacks but overall everything somehow progressed.

Fast forward 12 years later.  I have the most amazing care and support network that I could ever ask for.  I have a loving wife who knows more about MS and its effect on me than I do most of the time.  My providers at the VA hospital know every detail of my progression and take the time to ensure the best care possible.  Advocacy groups like the National MS Society have become such a close knit group that they, along with my other friends and family, provide the strength and support I need every day.  All that plus a beautiful baby daughter and a kick-ass dog give me every reason I need to get up every day and keep moving.

Where does that leave me today?  Feeling alone and afraid.  I have a ton of support but some of my decisions still feel like I am throwing a dart while blindfolded: where it will go is anyone’s guess.

The tough decisions never get any easier.

I have been on Avonex for close to 12 years now.  A good run by any medical standard, amazing by MS standards.  For the most part my body has dealt with the medication well.  Some sleepless nights…a few tough injections (I still hate needles!)…some occasional concerns (what is bilirubin and why is that an issue in my liver?).  Oh yeah, then there was the infection that developed in my leg back in 2007 and I almost lost my leg.  That was a rough year but fortunately it was a long time ago.  All that remains from that battle are a few deep scars running up my left leg.  A one-in-a-million infection that developed from taking my Avonex.

Make that two-in-a-million.  I am sitting here three weeks into the exact same issue in the other leg.  .  The only difference now is that the VA team is trying to jump on it before everything gets out of hand.  I’m currently taking 25 pills a day (on top of my weekly injections!) in hopes of preventing the leg filleting that occurred four years ago. 

So the obvious issue that comes to light is now my injection.  The first deep muscle infection is a fluke, the second is a pattern.  My neurology team wants to consider changing my medication.  It may be time to move on from my old friend Avonex.

The viable option to consider: Tysabri.  Once a month infusion, that’s nice.  Strong improvement on fighting the disease progression, another plus.  The drawback?  PML: progressive multifocal leukoencephalopathy.  What is it?  Besides being impossible for me to pronounce it’s a viral infection of the brain that usually leads to death or severe disability.   According to the latest figures, the overall risk of PML is estimated to be 1.66 per 1000 patients.


It will take close to two months to fully evaluate me and determine if I am a viable candidate for Tysabri.  During that time I will have blood tests, MRIs and numerous consultations at the VA.  During this whole time, I sit here and contemplate me next glorious decision:
  • Switch to Tysabri – and run the gamble of PML
  • Remain on Avonex – and run the gamble of a 3rd deep muscle infection
  • Stop the treatment altogether – and run every MS risk imaginable (including incurring my wife’s wrath). 

The tough decisions never get any easier.
                To Be Continued…..
Kevin Byrne - Portland, OR