I called Active Source today. My phone call lasted over 1 1/2 hours and I still don't have any information. I did ask that the call be recorded.

I spoke to a case manager, a team leader and a therapy support manager. Everyone was very polite and apologized for not having any information for me. I asked all of the questions that RW suggested. They kept trying to convince me that the ratio for PML is still 1 in 1,000. I insisted that the ratio may be much smaller depending on how long the 10 new cases of PML had been on Ty. Finally, the team leader understood. She said she would inform Leader Management of all of my concerns. If she receives any information from Management she will call me back. I informed everyone I spoke with that I am seriously considering stopping my infusions. Stress is not good for m.s. and I have been very stressed since Friday


Ty has been wonderful for me. I'm out of a wheelchair, using my hands again and much more independent. But, when I couldn't have an infusion for 14 weeks this summer due to illnesses unrelated to m.s. I began to lose the progress I had made. So, I know what will happen to me if I stop my infusions. But, being in a wheelchair, having limited use of my hands and being dependent on my husband is better than PML!!!!!!!!!!!!!!!!!!

Everyone asked if I had spoken to my neuro. I called her this morning and left a message with the nurse...my neuro doesn't work on Mondays. I'll hear back from her tomorrow. But, since I'm leaving for California tomorrow to visit my daughter and grandchildren it may be Wednesday before I actually speak to my neuro or the nurse again. I doubt that my neuro will have any info yet because the drs seem to get the info at the quarterly meetings and the next meeting isn't until sometime in September. Even then how much info she has will depend on how much Biogen is telling the FDA and the drs.

I mentioned during my phone call to Biogen that I was feeling like a cash cow. Biogen was only interested in PML because the more cases that are reported the more likely patients will stop taking Ty. Everyone insisted that my perception was incorrect but that they could see why I was feeling this way if I receive all of my information from Wall Street instead of through Biogen.

My next infusion is scheduled for November 6. At this point I seriously doubt I will be at the infusion center that day. I love what Ty has done for me but I have already had 26 infusion. At least I think that's the number...I've lost track