I'm joining this conversation late! A lot going on in my life right now. I want to go back to what marckstck posted. I found what those neuros doing very interesting!

On one hand, I'm glad they are being pro-active, and doing some research that could benefit all of us on Ty.

On the other hand, if they came out and said it would be best for all Ty users to have a spinal every 6 months, I might decline!

That is an expensive and invasive test that may or may not be helpful. I'm going to have to think on that over the holidays.

Definitely invasive... however, what is the cost for the spinal tap to be performed? It was covered by medicare for me in Canada (and done during diagnosis), so at this time I don't imagine a second would be done.

They'd have to have me 100% convinced that they were looking for something other than related to MS before I'd undergo another one. One week in the Brain Trauma Unit was enough for me!

Cherie

I went back and looked at my spinal in 2006. It was a little over $1200 for the hospital, and another $500 for the doctor.

I didn't have any troubles with it. In fact, after it was over, I felt better than I had for months. My husband teased that maybe I needed one more often to relief the pressure of my massive brain of knowledge!

Eep. That cost is nuts though.

I'd definitely refuse if medicare wasn't covering the cost, beyond my initial LP I had done (and as Cherie remembers, it was rather silly they went ahead and did that LP to begin with).

I suspect Marc's doctor is doing these because he is "studying" if there are early markers for PML, not just because he is "monitoring" his patients. In that case, people who have agreed to this procedure are doing it for the benefit of science, not to preempt further damage.

If I were taking Tysabri, and there was evidence that I may have developed PML, I guess I'd have to agree to a LP. In fact, I doubt very much that anyone currently on Tysabri would have a choice in the matter . . . IF they are suspected of PML and removing the person from the drug (+plasma) didn't effectively alter their course.

Cherie

Oh yeah I'm with you for searching for PML, but for an MS diagnosis second opinion (for example), no way in heck would I allow them to LP again.

I had enough to be diagnosed initially WITHOUT that LP

Cherie,

If you really knew about Tysabri, you would know that it is twice as effective as our other choices. The unknown is the long term safety of using the drug (I'm at two years as of Monday, 22 Dec no problems to report) regarding PML and other opportunistic infections. The other unknown is the outcome of PML. It was assummed that the outcome would be death or severe disability. 3 of the 4 PML cases since relaunch of the drug under monitoring have resolutions. 1 of the 3 patients has died - cause of death is unknown but PML or IRIS from PML treatment is suspected. The other 2 patients are out of PML danger. One only had minor weakness.

While it is always good to have a balanced discussion, your assessment of risk/reward comes from your individual situation of MS risk in using a less efficacious MS treatment.

Chris

Merry Xmas to you too, komokazi.

I suspect that I know much more than you give me credit for , but today is not a good day for debates for me. I have turkey to cook, kids to entertain . . . and it is Xmas day around these parts.

I will have to come back to your points in a day or so.

Thanks for your input.

Cherie

Cherie,

Definitely enjoy your day with the kids .... cooking not so much. I just wanted to post that I take Tysabri because of it's effectiveness - convenience and lack of side-effects for me are just bonuses. For me, the Tysabri risk/reward choice was easy - On rebif I was in a glider slowly/constantly losing altitude (slowly but still losing altitude) while also enduring the mental strain of fighting the flu like side effects for 4 days every week for week after week, month after month. I felt going into Tysabri that the risk of PML would ultimately be less than 1 in 1000 and that PML would not ultimately have to be fatal as I would treat any relapse like event as potential PML and stop taking the drug. I look forward to your comments.

Chris