Sunday, December 27, 2015

Disappointed

Well - it's been a while since I've posted anything.  Since being put into the control arm of the study (see HSCT), I think I've been feeling pretty down.  At the point that you're told you're not going to be able to get something that can pretty much kill this disease, it really messes with your head.  You start to feel hopeless and for me I started feeling like - What's the point.  

So - it's been a bit since I've felt like writing anything, but I'm back.  In November, I really started having problems walking.  My legs were crossing over each other, similar to a scissor action when I walked.   This was right before Thanksgiving, so my neurologist told me to go ahead and go to the ER to get another MRI.  My MRI actually looked good, but the doctors thought I was starting to go through a relapse and maybe the inflammation just wasn't showing up yet.  They kept me there at the hospital for 5 days to give me IV steroids.

To keep Northwestern University in the loop of what was going on, I sent Kim an email describing my most current issue.  Shortly after, I received a call from Dr. Burt.  He told me he wanted me to get on Tysabri, which is a much more aggressive MS medication. 

Tysabri itself scares me.  TYSABRI increases your risk of getting a rare brain infection called progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. Your risks of getting PML are higher if you've tested positive for the JC Virus or if you've been on immuno-suppressant medications.  

For me, I tested negative for JCV, but I've been on immuno-suppressants for about 2.5 years.  My local neurologist recommended that I should have a wash out period of 3 months before considering Tysabri. With that said, Dr. Burt is really pushing me to move forward with Tysabri now.  He feels that the interferon's are not strong enough and wants me to move forward with a much stronger med.

My decision  is to wait the 3 months and then have another MRI to see what's going on before making that decision.  So hopefully, I won't regret that decision.  

I'd love to hear your feedback on what you feel about Tysabri.