Knowledge is Power....

Usually.  In this case, it just gives me more to be concerned with. 

Tomorrow, I start my new MS treatment, Tysabri.  It's an infusion that I will get every 4 weeks at the Barrett Center at UC.  I have read through all of the information I got from my doctor, including the big-worded medication guide given out by the pharmaceutical company.  Here is what sticks out:

"Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability.  This infection is called progressive multifocal leukoencephalopathy (PML)."

Those 2 sentences are the first thing written on every piece of literature and it's always in big, bold letters.  I am starting to think it's like the signs on the road when the bridge is out, "Bridge out in 1000ft", "Turn around, Bridge out", and finally, "Last chance..."

With the course of my MS, I sort of feel like the bridge is out.  New lesions on every MRI, new symptoms, and it's not been a year yet.  If I don't do something more aggressive now, my quality of life is sure to continue to spiral downward.  I would like to dance at my 40th birthday party in September.

So, now that I knew a lot about the really big, bad side effect, I started to think about the benefits.  No one has gotten PML in the first year of Tysabri treatment.  It is supposed to significantly cut down the number of relapses.  There is a small possibility that it may help some of the symptoms I already have.  And, most people get no new lesions while on the treatment.

For me, it was kind of obvious.  The benefits definitely outweigh the risks.

But, that doesn't mean I'm not nervous to get the first treatment over with.  And I'm hoping that I don't start with my hypochondriac-ness and think every twinge I feel is something terrible lurking in the corner of my brain. 

I did let everyone know what to look for just in case I start with a weird reaction or side effect.  One thing is yellowing of the skin and eyes.  The other is if I start acting really wacky.  I have gotten responses that ranged from, "How will we know?", "More wackier than usual?", "I think I'll just watch for the yellow eyes...".

I also have been threatened not to die on my friend's couch tomorrow night, post-infusion. 

With friends like these.....I'm a lucky chick.

Ahhh, Normalcy....

Well, it seems I'm finally back to "normal".  Finished my 5 days of steroids, and my week or so of using a cane.  I'm actually kind of glad I had my first real relapse.  Now all the mystique is gone and I don't have to worry about when it's going to hit me, or what it's going to feel like.  The one thing I was definitely not ready for, was the weird exhaustion.  I had maybe been a little more tired when I was first diagnosed, and I knew I needed to make sure I got my rest (you will get no arguing out of me when it comes to taking naps...) but this was a lot different.  I had trouble getting up my stairs to my bedroom.  I haven't had that happen yet.  Luckily it was the weekend and I spent time just resting.  By Monday, I was back at regular work with regular hours and, while I took a nap before dinner, I was almost back to my normal laziness.  By the end of the week, you wouldn't know anything was wrong with me except for the occasional stumbling, and then you would just think I was tipsy.

Then I had my follow-up with my neurologist.  He agreed that I am back to my pre-relapse self.  My walk is still off, but honestly, I'm not really expecting that to ever get back to normal.  I kind of thought we would stay the way things are, but he had other plans.  Since it's not even been a year since I was diagnosed, and I have been on Betaseron since June, and since every time i get a MRI, I come up with new lesions, my doctor thought I should consider something else.  Tysabri.  He told me some of the risks and I read about them also.  Going with what I know from him and what I read, I think, for me, the benefits outweigh the risks.  I can't keep getting new lesions and new symptoms.  I just can't.  If I do, my disability will most likely continue, which won't be good for me and my job, or just me personally.  As my bff, Renee (the mighty smart Microbiologist, who was able to read about the medicine and tell me what the big words meant) said, "Your brain is already being attacked...."  Um, thank you?

Tomorrow I meet with the infusion specialist and will get all the inside scoop.  Should be interesting, and I hope only mildly frightening.