I don't know a whole lot about Ty other than some of the side effects and some of them being serious. So, I just have to ask this as it concerns me. How common is it to have infections like what you have after your infusion? Is this a normal side effect? Do most people get that? Again, it concerns me as I know that Ty causes PML and I would hate to see that happen to you (or anyone for that matter). You have been through enough already.

BTW - I hope you don't mind me asking that. It's just been worrying me a bit.

NOt really sure, it depends on the person I think. For most people I see posting on the TY board, they can tell when it is time for their infuion, it gives them this like burst of energy and makes them feel great.

I don't get that at all. I get an inability to do anything for 2 days where I feel like someone drained the life out of me, then I feel ok, then the next week I get sick. I know a lot of people have the sick effects, which was one reason I asked about changing the schedule from every 28 days to every 6-8 weeks; which started the whole argument with the neuro in the first place.

I did get tested for the JC Virus which seems to be a determining factor in PML. No one with PML ever tested negative to the JC Virus, which would have been the end of the ty for me had mine tested positive. As it stands, I have been looking into other options because the longer I am on it the more I dislike it.

wow Legz, they sure are putting you thru the wringer with this.

I don't know how this info might affect you, but I've been off the betaseron since 28 June, saw my neuro (am still off it) and he said the evidence shows that when a person has been doing well on a DMD that when they stop, they typically do well for 3-6 months, then begin to have more lesions and a return to problems with the MS.

that would lead me to think your idea of every 6-8 weeks would be good for you since you don't get much time to feel better after an infusion. Also--it is YOUR body and you get to make the decisions here. They may not like it, they may recommend against it, but ultimately it is your decision.

Love your dancing girl, Vic.