Friday, December 28, 2007

Local coverage of Fingolimod (FTY720)

I'm on an email list for an MS group spearheaded by my neurologist at Shands Jacksonville, and today I got an email with a link to a local news story about the clinical trial.

It was interesting to see another patient who's going through the same thing as I am and even better to see that he's receiving great results.

Here's a link to the story. I tried to embed the video but I'm no geek and kept getting errors. At any rate, my neuro (who's also my hero) is the doc in the video.

Click here for the video and story.

Monday, December 24, 2007

Fingolimod Christmas

Twas the night before Christmas
and all through the place
not a muscle was twitching
not the ones on my face

The numbness was gone
From my old achy calves
And I didn't take any baclofen,
not even halves.

I in my jammies and my
boyfriend in tow
had just settled in to watch
our favorite show.

When what to my wondering ears
should I hear
But my neuro's voice chiming into
my brain loud and clear.

"No Copaxone, no Beta, no Avonex now,
No Rebif or Tysabri for you, holy cow!
You'll make it on FTY720, you'll see...
You're nigh seven months being relapse free.

As dry leaves before a wild hurricane fly,
My pills swirled up, up into the sky.
Only to rain down around me in piles
Guarding my body from MS all the while.

Okay, so I'm making that part up,
it's true,
But I just can't believe this stuff
won't be approved.

Without one small twitch
of a side affect showing
I share with you on Christmas Eve
My spirits a-glowing.

If an oral medicine helps
slow the MS beast,
Then upon Fingolimod soon
we'll all feast.

To the top of my soap box,
to the top of the wall,
Now stay right behind me
and cushion my fall.

As I come back down dizzy
and legs all tuckered out...
I yell "Merry Christmas!"

and go back inside to drink a cup of hot chocolate, ponder why I haven't gotten the packages wrapped and why I have sat here at the computer so long writing some stupid poem that doesn't even follow the original correctly and makes no sense...

And now you can wonder why you bothered to read this.

Merry Christmas!!

Monday, December 17, 2007

Passing the four month mark

Yesterday marked the fourth month since I spent the day getting Randomized in this clinical trial of Fingolimod. That's one third of the way to completion and I'm already feeling wistful about the possibility that perhaps it will not win FDA approval for some stupid, unthinkable reason.

In the past Copaxone was my pacifier. Knowing I was taking my shot and doing all I could to ward off the MS boogie man. But the boogie man figured out that he was impervious to my Copaxone sword and he raised his ugly head repeatedly. Then I had to spit out my Copaxone pacifier (figuratively speaking) and reach for the bigger gun with heretofore unknown powers: FTY720.

Since brandishing this new shiny weapon the MS boogie man seems to be left scratching his head and laying down for a nap with seemingly one eye open just in case I put the weapon down and he sees a angle of attack left open.

I want this drug to be the Cloak of Invisibility or Invincibility for me and all who shall one day come to take it. I know there are lots and lots of MSers out there who have endured this disease longer than my single digit battle (9 years) and have lived through times where the only answer to the question of "What can be done?" was "nothing." Those people have my undying admiration... to have made it thus far and lived to tell the tale is a feat that I cannot imagine.

It's strange when you have a chronic condition from which there is no respite. You can't help but wonder what is in your future. Even though I have no immediate outward signs of disability, I think about what might become of me quite often.

The other day, my kitten hurt her paw. She put it somewhere she shouldn't have and ended up in pain. I don't know quite what happened, but she spent half the day limping. Other than the limp, she was the exact same kitten she's always been.

That got me thinking... how fortunate animals and small children are. They don't have the capability of pondering their predicament. They don't spend their time dwelling on "will this get worse?", or "what will I do if it does?". No, they seem to adjust beautifully to their new reality and move on.

I want to be like that. I want to move ahead, never look back, and face whatever becomes of me with an attitude of "I can handle this!" It would be a true blessing if I could.

I hang onto the positive notion that these drugs in clinical trials are going to work miracles for us all.

Have a wonderful holiday season....

I'll see you next year.