I know I haven't blogged in a while but life has been driving me crazy since my major source of income dried up.
Just a few minutes ago, I walked by the TV where my mother was watching Fox News and I heard the words "MS" and "new pill". This perked me right up so I grabbed the remote, punched up the volume and sat back to soak it all in.
They didn't mention any names but said that 2 new pills were competing for first ever FDA approved ORAL treatment for MS. A doctor showed an MRI and described in grade school terminology the basics of the disease and what the pills do to combat it.
They spoke of a "news release today" that I was unaware of and so I sat down here to google.
My heart lept into my throat as I did a Google News search to find out that Novartis has filed for FDA approval of Fingolimod / FTY720 yesterday, January 20, 2010 -- exactly 2 years and 5 months to the day since I swallowed my first pill.
This is great news, however I am terrified by it. The clock is ticking on my free ride and I know it's silly because it's not like the FDA is going to just rubber stamp this today when it hits the big guy's desk, but it's a huge reminder that this trial is not going to last forever and I'm not going to get this stuff for free forever either.
I have GOT to get that letter done (the one I drafted and then set aside to go over again a few times but haven't yet gotten to) so I can send it off to the CEO of Novartis and ask him to help a guinea pig who's down on her luck out with a lifetime supply of Fingo.
I just don't want it to sound too whiny but ever time I read it, it sounds all "woe is me" or is that "WHOA!"?
Anyhow, when I get it written, I was toying with the idea of posting it for all to see here on the blog, but don't know how that would effect the results....
Any ideas you readers (if anyone still reads this) have for getting Novartis' attention and persuading them to give me drugs, please post them as a comment -- I'm all ears!
This has been a wonderful journey for me. I don't want to revert back to relapsing every 3 months and being chronically under the dictatorship of so many horrible symptoms. I would rather die than go back there.
When Novartis yanks their Magic Carpet of Fingolimod out from under my feet, I just know I'm going to fall into that dark, black, bottomless, horrifying pit of MS again.
I'm scared. Someone tell me how to keep that carpet, if you know a way!
Here goes nothing. I'll be on the edge of my seat following right along as we wait and see what the FDA has to say.
Cross your fingers, would ya?