Saturday, August 10, 2013

It Finally Happened #gilenya #multiplesclerosis

Yes, I know I said the party was over, and truth be told there's nothing left here on this blog but the confetti on the floor and a bunch of empty solo cups to pick up.

But for the entire duration of this blog, which has been about my experience in the TRANSFORMS clinical trial for the MS drug Gilenya (fingolimod, FTY720), I never had a relapse.

I guess this blog was my lucky rabbit's foot. I should have kept it going. The minute I called it quits (and yes, I realize it's coincidental, but the irony amuses me) I have a bona fide relapse.



For the past week or two I have been suffering crushing fatigue. No all-nighter in my 20's could ever have topped this. A feeling like Horton is sitting square on the center of my chest.

Then, when I'm able to shove him off my chest and become vertical, I realize karma thinks I'd look faaaaaabbulous in a lead suit.

Alanis Morissette left a verse out... "like gaining weight, when your legs don't want to move". I'm serious. I was stuck in bed part of that time taking comfort in snacks because they made me feel better. Thank God the worst of it was over after only a couple weeks or they'd be cutting a hole in the wall to get me out of this joint.

I called my neuro when I finally decided it wasn't just hypochondria getting the better of me (is there an opposite of hypochondria because I think I have that now. Whoops, no, there I go begin a hypochondriac so I guess I'm good).

I went to have a checkup at the clinical trial center and they did the EDSS on me. I had increased weakness in arms and legs, numbness in parts of my forearms and calves, and for the first time EVER I couldn't complete the 500 meter walk.

They always made me do 24 laps of the study center hallway which measures out to be a total distance of 500 meters. I have always completed it (one time in just under 10 minutes), and always unaided.

Yesterday I asked for my cane after 2 laps and had to cry "UNCLE!" after 18 total laps. The study coordinator said "wow! something really is going on, isn't it!"

Duh!

So I will re-end this here now that there is an ending and "Girl Has Relapse".

I'm not gone, however. My new obsession, besides writing for www.healthline.com, is my site, www.partnersinresearch.org, where I'm hoping to educated people who are curious about clinical trials for MS what it's like from a patient point of view.

Also, stay tuned for an update on where I'll be blogging just any old stuff. I need a place to vent and this blog is too confining. There's more to me than my MS, after all. :)

Peace out.

3 comments:

  1. Remember when we were all on interferon and a 30% reduction in relapses was the best we could hope for? I'm spoiled, I hoped for 100% effectiveness. I'll be on the lookout for relapses here too.

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    Replies
    1. I know, right? Eight years on Copaxone with nothing to compare it to, plus a doctor who kept telling me "of course it's working. You'd be way worse without it", and I was sailing in a perfect storm. One relentless relapse after another. How can I fault gilenya for this one mild setback? They'll still have to pry it from my cold dead fingers to take away my fingolimod. (Hope I remember to grab the bottle right before I die... that would be hilarious! ... well, not the being dead part, but you know what I mean).

      Delete
    2. I know, right? Eight years on Copaxone with nothing to compare it to, plus a doctor who kept telling me "of course it's working. You'd be way worse without it", and I was sailing in a perfect storm. One relentless relapse after another. How can I fault gilenya for this one mild setback? They'll still have to pry it from my cold dead fingers to take away my fingolimod. (Hope I remember to grab the bottle right before I die... that would be hilarious! ... well, not the being dead part, but you know what I mean).

      Delete