Hi River,

I didn't mean to sound accusatory or anything but the more places it gets posted and people naturally react with fear or panic, the less likely those who are looking into maybe joining the trial will decide in favor of it.

I thought if I post my own facts as they relate to just my own journey through this trial that it might boost someone else's confidence so that they, too, might take a chance.

I'm a little possessive/protective of my Fingolimod because that little brown pill has literally turned my life around. When I was considering the trial I was at a very low point in my life. MS was knocking me down every 3 months and I just felt like if this was all I had to look forward to for the rest of my life, why bother? Ya know?

I was scared to death to enter the trial, scared to death not to. Fortunately for me it has given me new hope. 12 solid months with no relapse almost has me feeling human again.

Some of the things I can do now that I would not have attempted a year ago:

I can run short distances (75 feet across my yard).

I go to the store and don't worry about where the nearest parking spot is -- I have actually deliberately parked across the lot in order to get a little exercise.

I have no clue where my cane is.

I take the kids to the park and don't freak out over being in the heat. I still don't like it, but it won't land me in the hospital with a fresh relapse.

I went to the Blue Crab Festival and walked around. <-- That may not seem like much, but I have avoided all festivals in my town for the last 10 years due to succumbing to the heat at a festival and having to be carried out years ago. For me to even consider going to one was a major milestone.

I now have all the feeling back in my feet and very minimal residual symptoms from any previous relapses. Some days I feel totally normal.

All that said, I am a firm believer that it's only due to being in this study that I have my life back.

Even if the death can be somehow linked to taking Fingolimod, I doubt I would pull out unless they make me by stopping the trial. That's a chance I am willing to take for the QoL I have gained.

I am sure that even if for nothing else but the issues of the initial drop in heart rate upon first dose they will have something similar to the TOUCH program to monitor patients closely.

Sorry to have sounded defensive. I should realize that people are going to discuss this and there are going to be a lot of reactions...

Anyhow, I'm off this morning to take the kids to the movies...something else I wouldn't have been up to last year.