Well..
I heard back from the research nurse regarding this study today and answered a couple questions, sooo.. we'll see what happens Now, I don't know what to do. I was approved for the Betaseron assistance program and now this.. decisions decisions But if this oral medication doesn't give me the flu like feelings that betaseron did, I might go that route.. either way

Monique

I am struggling on copaxone, and while I have my fingers crossed that my body will all of a sudden be happy and accept it, i worry. I have failed at interferons, and wont take Ty, even if I could. That leaves precious little in the barrel to choose from, and this was one of my hopes.

TickledPink restored some of my sanity about it. I am glad to hear you are doing well. Maybe I dont have to scratch it off my list yet.

What is happening with the Copaxone? I know there was posts on the MSworld forum about dull needles *shiver* and I was going to switch from Betaseron to Copaxone but I'm not prepared for dull needles or bee sting feelings (sigh).

Then I did get the Beta assistance but I think Beta made me depressed and I also have a thyroid prob. and I know it can effect that so I would lean more towards this study.

I have been reading the postings of the study on the msworld forum, and tickle's postings and I'm not worried about the deaths with this because that usually is the first/second dose you have any reactions and they keep you there and monitor you.

I just don't know if I'll get in the study. I know it can effect your blood pressure/pulse but it might be good in my case since it's supposed to raise your blood presure (I think) and your pulse lowers a bit.. well I have low blood pressure/high pulse (which I'm going to see PCP next week about).

Do you have any study sites near you? I am looking at the MS center of ATL, even though I had a miserable experience with one doctor there I hope this is different. Definitely keep this open as just another option

Monique

Ps- because my student insurance is so cheap, an added bonus is all the free testing

It seems the more people I talk to the more stories I hear. I don't know what the entire truth is any more but I believe that if I am careful and vigilant about paying attention to signals of any type of impending infection from my body that maybe I won't end up in the same boat as those two unfortunate patients.

I know they had a teleconference yesterday between Novartis and all the study centers, so even tho I haven't spoken to my study coordinator since then I am confident that if there were anything I should be alarmed about I would have been told today.

It really hits home that these clinical trials are nothing to take lightly. Even though I've not had anything but minor side effects (UTIs and upper respiratory infections) there is always the potential for something to go wrong that they can't warn us about...after all, we are the guinea pigs who find the stuff out to eventually benefit the masses. If I am benefited in the meantime, then it's icing on the cake.

It's nice to see that others are finally calming down over this devastating news. It's hard for me to remain level headed and objective when I read about others freaking out over the news.

On a more positive note: I have now gone 13 months without one single relapse (averaging 1 every 3 months prior), I have gained all the feeling back in my feet (even that which I had lost 10 years ago), I have loads of energy, I'm no longer depressed, my son asked me to "slow up, will ya?" when we were walking in the grocery store, the only meds I take are my multivitamin, calcium and Fingolimod (or the once a week Avonex, whichever is the *real* thing).

I just basically feel like I've been given a second chance.

I don't have a clue where my cane is, either. To me, that's a good sign.

Yay.. I'm getting the consent forms and then will have TONS of testing and then I start my first pill *lol* The nurse in the study was funny saying the beginning of this is like a part-time job, but I'm ready! I just hope I pass all the testing...very excited!

I've read all the posts, but if/when a trial of Fingolimod comes for PPMSers, I have to try. There's no other choices, my QoL could use much improvement. If you don't take a risk, you risk everything (I read that in someone's signature.