Merit Badge for Demyelination

Oy.  Okay, so today has been one of those really rough days.

I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine.  Which, if you've never had to do that, feels like torture after about 80 minutes.  It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"

So I was hoping that the MRI experience would be over for this year.  WRONG.

Today, I was supposed to go in to start Gilenya.  I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process.  So I decided to go in way early just in case.  I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else.  So who else wouldn't be freaked out?

When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed.  But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.'  I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.

WHOA, hold the phone, I failed?  Let's recap.  I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right.  After a battery, got diagnosed, then treated with a 5 day course of Solumedrol.  It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway.  The 9mm lesion in my left temporal lobe is now 3.3cm.  Centimeters!!  Tripled in size.  Whoa.

Just, whoa.  How are you supposed to feel about that?

They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP.  I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half?  What a freaking nightmare!!!

Oh, and did I mention ... happy birthday to me?  OY!