Riverwild, thanks for your oh so comprehensive reply. Don't worry about the questions. i'll respond as I can.

My neuro is head of the MS center in a large city and very busy. I've got an appt w/ him in a couple weeks but have to wait until then to really learn more. In meantime, I'm just back and forth w/ nurses (who often don't really know much). I trust his reading of MRI's. Usually just after I have them done I've got appt w/ him, pop up to his floor and see everything on his computer as he does. He "reads" the info while showing it to me, and the radiologist's report coming after always backs him up. But the nurse didn't/can't tell me WHY he doesn't think it's PML.

Strange, isn't it, that Biogen doesn't have a site with all this needed info and maybe even a site for patients to share info among themselves? :rolleyes:

Is it really true that they know the diff between MS and PML lesions? Cuz I couldn't find any good info like that anywhere. I know MS tends to be periventricular, but other than that?

My last infusion was exactly a week ago. I spoke w/ a nurse at the clinic beforehand and she presumably spoke with neuro before OK-ing it. It's just hard never knowing what's going on. And I guess I kinda assume nobody can truly tell me what's going on either? That it's all guesswork to a large extent?

But thanks for that info on steroids, how typical it is to worsen before improving. In past I've always improved almost immediately on them, so this is different for me in lots of ways. And I'm in process of doing a vid retrospective on my life just now so I get anxious that I won't even be able to get it done. Cuz if I do get PML I am not sticking around to be so severely disabled! I actually haven't even heard about the JCV assay. Did that just come out and is it proven reliable?

I so appreciate and concur about the difficulty of cognitive problems, which hits our very sense of who we are. My neuro sez that though most MS-ers are affected that way to some extent, only a quarter are hit in a major way. It takes me about ten times longer to do anything involving thinking and my brain even starts to literally HURT if I do it too long.

Again, thanks so much for your response! :)

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

The way the radiologist explained it to me was that MS lesions are close to fluid and blood spaces and PML lesions are usually found in white matter NOT adjacent to those vessels and spaces. He also said MS lesions are usually oval in shape and PML lesions are irregularly shaped in most cases, and most of them do not enhance with gadolinium, but that is not always the case.

There are lots of images of PML lesions out there and the ones I have seen are scary, like the Blob eating a brain...:(

I was contacted by Biogen
 

Today I spoke with a rep who wanted to know if I would be interested in a Ty group that would want feedback from me, allow me to ask questions. I didn't see a downside so I am participating, she said it would be about 4 times a year. She did confirm 49 pml patients-19 in the U.S. and said 67,000 on Ty worldwide with 38,000 in the U.S. She told me that those of us who called in were the reason Biogen is now more forthcoming ... that the odds for those of us on Ty over 2 years the odds are still not more than 1/1000.

Just wanted to share :)
Linda
forgot to say I had #46 this morning :)

Yay for #46, Linda!

I'm glad to hear that you will be sharing your perspective, it's the patients who have been on this drug the longest that have the most to offer, both to the pharmas and to other patients, and the pharmas should be using those with experience who are willing to speak!

I'm also glad to hear that the reps are being more forthcoming. Just a year ago I had an argument with one of them, asking the woman how she could justify selling a drug that she couldn't back up with information that should be shared with patients before anyone else, information that she knew and that could make a difference in someone's mortality...she had no response, just looked horrified and kept spouting the party line. I truly felt bad for her because it was obvious that she wanted to speak and felt as if her job would be in jeopardy if she did.

I received my paperwork for the Stratify-2 study, filled it all out and dropped it all off, spoke with my doc and he said more than likely the blood draw would be next week sometime, with results due back in 4-6 weeks. I'm looking forward to the next step in our gaining information on this drug!

Linda, congrats on #46!! Whoohoo!

RW, I have my fingers crossed you will be negative. I hope we all will hit the negative jackpot. :)

I'm still waiting for them to get all their paperwork in order.

All I can say is, "Ditto"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've never been so excited about a blood test before...LOL

hugs,
Shayna

More PML
 

I'm sure people have read this but I wanted to post the latest. As of June 7 there are now 55 cases of PML. 20 of the cases are in the United States. There have been 11 deaths. But as I understand it, more people in the U.S. are on Tysabri than elsewhere.

There have now been 24 cases reported since Jan. 12, giving an average rate of 4.8 per month. Hunter said this would imply a further 29 cases by the end of December, giving an estimated 84 PML cases by the end of 2010.

http://online.wsj.com/article/BT-CO-...atestheadlines

Most of the recent cases seem to be in people on Tysabri 3 years and longer.

http://chefarztfrau.de/?page_id=716

...and reporting from the other side of the coin...#40 down with no problems, no concerns! :)

Another infusion down yesterday. They forgot to do bloodwork again, only 2 blown veins. Aside from the usual exhaustion afterwards no problems. Still no improvement either. But I go monday and tuesday for more MRIs. If we see any new lesions or no significant improvement I am off to clinical trials.