WorldWarriorMama, welcome!!!!!!!! I'm sorry you're having a flare-up...but, you've come to a great place to get info and share experiences of living with our MonSter. I had infusion #33 yesterday so I hope I can make sense....I'm still a bit foggy. Don't expect Biogen to tell you anything they aren't forced to tell you They are more co-operative now because so many patients complained when Biogen stopped giving monthly updates.

My neuro has told me that a good radiologist can tell the difference between M.S. and PML lesions. I wish I could explain it but I don't remember so much of what she said that day The important thing for me was the fact that the lesions could be differentiated.

My neuro has told me to sit tight. She and any of her Ty patients who want to take part will be participating in the assay for PML. Her office will call me as soon as everything is ready......whatever that means....LOL But, from what I was told the blood test is quite reliable. Anyone who tests negative will be able to continue with the infusions and be retested every 4-6 months. If someone tests positive he/she will be taken off Ty. My neuro didn't know what would be done if a patient insisted on continuing with the infusions despite the risk of PML. I know that Ty has improved my QOL to the extent that I would hate to give up the infusions and revert back to the way I was before. There are somethings worse than death...although my family doesn't believe me. Being totally dependent on someone else, feeling like a vegetable, not being able to think straight and having difficulty communicating is not my idea of QOL.

Although I haven't had an exacerbation since I began my infusions when I did have my last exacerbation and received solumedrol I was very surprised that it took weeks for me to begin to feel better. I felt like I was getting worse daily. I didn't think the solumedrol had worked. It was actually a couple of months before I I had full use of my hands again. And, I went through months of PT and OT.

I hope Ty helps you WWM. Hang in there and don't give up. Also, ask your neuro about the blood test. It should be available soon. I know that sounds like "the check is in the mail" but it is true....everyone is talking about it. The nurses at my infusion center as well as the m.s. patients who all go to different neuros are so excited about it. Most of the patients at the infusion center are there for chemo. There are only 8 of us who are there for Ty.

I hope everyone has a wonderful weekend.

hugs to all,
Shayna