My name is Tony Conway, and I have ALS.
If we're going by official titles, then I should say that I have Amyotrophic lateral sclerosis, or Lou Gehrig's Disease for you baseball aficionados.
Folks at Johns Hopkins Hospital are still completing some tests, but Dr. Rothstein was pretty confident in his diagnosis. My holding out hope for a different diagnosis would seem like wasted energy at this point.
It's hardly surprising that a blog address "ihaveals" should be available; I can't imagine too many people being prepared to write about this, but I see some value. It's helpful to me -- a release -- to write about the things going through my mind, and, who knows, maybe someone else out there who suffers from ALS will find it valuable.
Anyway, today is day two of my Rilutek/Riluzole regimen. I'm told it's the only FDA approved drug out there for ALS. Dr. Rothstein was abundantly clear: this isn't a cure, it just slows the process down.
Does it really? I was diagnosed in July 2010 and on Rilutek since October 2010. The disease is progressing.ReplyDelete
The disease will always progress. You doubt the research behind Rilutek?Delete
My mom took Rilutek immediately upon diagnosis, and I can't imagine her progression going any faster than it did. In my opinion, Rilutek is as close to useless as you can get, though every one is different, and maybe it does slow progression in some folks, but it didn't in my mother. pALS need more options and Big Pharma doesn't seem to care about finding them? Sad.ReplyDelete
the drug pipeline has not been anywhere near as fruitful as it should have been. and I have to agree; patients take rilutek largely on faith. i hope it's working. i trust it's working, but i don't really know.Delete
sorry to hear your mother didn't benefit.