I just spoke with my neuro-team and although they agree that the absence of IVSM would provide valuable data, the delay in treatment could cause nerve damage. Hence, they have a plan...and so do I.

With an incredible amount of help from Lauren, Biogen & Elan have done something with my insurance about the infusions (and I do not know the details yet...but the result is expected to be certain this time).

On November 3 I see my neuro-team to start Tysabri again!

What a rollercoaster ~~~~~~~~ Just up and down and up and down! LOL

Well, it looks like I may have missed the first Tysabri train pulling out of Riverside, but I have a free ticket to the next one, and it boards on November 4.

-Vic

Lauren,

I do not know who you called or what you did, but THANK YOU !!!!

I see my neurologist on November 3 and will be back on Tysabri on November 4 !!!

Some way or another there seems to have been a deal negotiated between Biogen, Elan, Anthem Blue Cross and the infusion center to make this all work out in a fair manner.

Thanks again for all of your help !!!

-Vic

Holy Cow, Vic! Good for you!:)

How's your stress level with all this back and forth stuff??? :rolleyes: It'll be interesting to see the graphs after all you have been through!

I am glad to hear the problem is solved!

Thanks!

The good news is that I have not been stressed by this entire process since it became clear that there was an opportunity to monitor the physical response to being off of Tysabri. And, in an odd way the loss of that evaluation is kind of a bummer (as I must be nuts).

-Vic

You're just a scientist through and through Vic! :) I hope it's true, that you'll be back on Ty and the problems will be over. I'm glad you're looking at it in a positive way though. :hug:

Wow, Vic. I've been off the board (too busy right now) and checking in now and then. What a ride you've had!! I am so happy that things worked out in your favor and that you will be going back on Tysabri. Whoohoo! :yahoo: I know that you may have been excited about charting what happened off the drug but I'm glad to know you are back in the club with us!

Biogen reports another case of PML.

http://www.247wallst.com/2008/10/biogen-finds-mo.html

Unconfirmed reports state that the case of PML was caught early and that the patient has already received plasmapheresis treatments and mefloquine, and is under treatment as an outpatient. The patient had a prior history of treatment with interferons, glatiramir acetate and methotrexate. It is unknown at this time how long the patient was off those other drugs.

More forthcoming as it becomes available.

I think the reason this case was announced was because it is the first case in the US since Ty was off market, and the first under the TOUCH program.

Patient was previously treated with methotrexate for a "rheumatic condition" with last dose 4 months previous to start of Tysabri.

Patient is a 59 yr old female with history of 14 infusions.

Patient is under home treatment by her doctor. She went to the ER with aphasia and nausea. An MRI was done and PML was suspected. Treatment with plasmapheresis and mefloquine was started immediately.

Info is slowly trickling in, but I don't expect to hear much as far as ongoing news due to HIPPA, more than likely just general updates.

Hi all :)! Sorry I haven't been around for a while. I'm remaining stable (no relapses) since I started Ty in February. No improvement. I'm having an mri next week because my cognitive sx are getting worse. I saw neuro this morning and the first thing he said to me was 'there's been another case of pml'. He also told me that the woman appears to be responding well to treatment, not saying that there won't be lasting damage but it doesn't look like it will be fatal. That's great to hear! Hopefully there won't be many more cases, but if there are it seems that doctor's, will be able to test and treat quickly.

I had my 19th infusion yesterday and my six month MRI. The infusion went well, and I have the CD of the MRI. I had the MRI after the infusion though, so unless the doctor sees something bad on it when he gets it emailed to him from the radiologist, I expect to hear his opinion a month from now. I checked it out and it looked good to me for what that's worth, lol.

There was some issue with my eyes yesterday when he examined me and he wants my records from the eye doctor. When he had me follow his finger left to right, there was some double vision (sort of) to the left. I doubt it's anything though.

I'm tired today but it's slow at work so that's a good thing.