Your picture looks like you are my age or younger. I am 47, soon to be 48 the end of March.

I'm very much at peace with my disease. I think I have it very well under control and managing it the way that fits me. I think you're managing it the way it fits you.

I have a comfortable home (3400 sq. ft. on 3/4 acre) that is paid for. I have a great retirement program with my work that will cover disability at a much higher rate than the government if the time ever comes that I need to use it. I have raised four great men that are either graduated from college, or attending at this time, who gave up 2 years of their life to serve others both here and abroad. I have a wonderful life, and give thanks every day to my Heavenly Father for the blessings I've been given, including MS.

I don't think I need to have 15 years to understand you better. You seem to use numbers to justify your decisions and to react to others. Your last post is to prove once again that you could not be possibly wrong in your opinion.

I understand your bias now, and that is how I'll read anything you ever post. You can do the same with me. My bias is faith based, yours is number based. And maybe biased because of health care in Canada. It is certainly different than America. I hope you never regret your decisions, just as I hope I never regret my own. We're just two people dealing with a disease.

And as far as the one plus one equals two, the problem with that is that four plus negative two also equals two, along with six plus 10 minus fourteen equals two, and an infinite other examples.

You can do whatever calculations you want to get the answer you desire, thus the problem with statistics.

(Don't tell anyone that I use data all the time to prove that teachers aren't doing what they're supposed to be doing with regards to software when their principals ask for the info - just a small bit of hypocracy on my part! )

YIKES, you are old (like me!). I am older then you, but not by much . . . guess I just look younger than I am (in pictures anyway ).

Yes, we are both managing the disease the way that suits us as individuals. It really doesn’t matter to me if you think you couldn’t face your family having made the same choices, or can’t understand (or disagree with) approaching things the way that I have.

I haven’t closed the door to any options, including Tysabri. What you choose to do (now or later) is of NO consequence to me, and I have not (and do not) make judgment about other’s choices . . . to each their own.

No, you don’t have to have MS for 15 yrs to understand me better, and that is not what I meant. What I meant was that in 15 yrs, maybe I will have lived long enough to see the errors of my ways . . . but after about 45 yrs with the disease (at that point), I honestly don’t think I will have any regrets.

My bias is based on experience, research AND faith. Our healthcare systems may play into it our points of view to some degree as well . . . although if I believed that there was any point in bucking the system, I could and would.

Not everyone thinks the same as you in the USA (or me in Canada) but we are all entitled to voice our opinions. BTW, we are both in America (north).

I didn’t say "other" numbers can’t add up to two, just that one plus one always equals two. When the variables are simple, the math isn’t complicated either.

I don’t “want” any specific numbers, I have presented what is documented in both Chris and my links. As I said, I sincerely hope the PML stats reduce over time, but they are what they are for now.

Have you even reviewed those links, 4bm, and do you have any specific objection to what I've presented? It’s easy to sit back and say “you are wrong” or “you don’t know” . . . but please show me where I have misinterpreted, if you think I have.

Cherie

Rather than continue the interpretation game, I'll just contact Biogen to see what the numbers include. Suggest you do the same Cherie and then we can meet back here to relay the result.

Chris

That is a GREAT idea, Chris.

When you find out what your tables indicate, would you please also ask the person's name? If the answer seems to be the way you understand things, I will follow up with him/her specifically on what the (monthly) differences between the two tables indicate . . . because the numbers would obviously require clarification.

Cherie

Yeah, I've looked at the links, but the numbers and delving into them deeply are not what interests me. I don't think either of you are wrong. I think you're both looking at them from your particular viewpoint. That was all I was trying to say.

I could care less which of you are correct in your arguments.

But then that is because of a particularly strong bias I'm experiencing at work right now with a debate coach at one of our high schools! I totally dislike debate, and debaters. They make me grouchy! It has nothing to do with MS, this forum, just my work! I've had to search the internet for over a month now rebutting her arguments, where she has just presented the information that was particular to her need and her side of the story.

In fact some of what we used against her was research she presented for her side!

So I apologize if my frustration with all of that spilled onto this forum. I guess I saw that happening here, and it is futile. People stick to their point of view regardless of what is presented to them.

I'm glad you guys have somewhat worked out a compromise. All I can say is that I'm on Tysabri, and I'm grateful to those researchers working hard to find something to make my life with this disease better!

One thing we can all agree on in this thread,

A cure in 2009!

As someone who loves statistics and has been accused of being able to argue the paint off of a barn.... (LOL), I daresay (and I'm sure someone will correct me if I'm outta line) seriously.....love y'all but I'm not waiting with bated breath for any kind of 'data resolution' or 'final consensus' here. Maybe I'm alone in that? Who knows...
But such finely sliced and diced analysis is not going to change peoples' behaviors or perceptions of Tysabri and the hope it provides to many.

If I deserve to be thumped, go ahead, just thought I (personally) needed to express this.

We won't thump you Becca! But seriously, I agree with you 100%. None of these discussions has ever changed my mind about any drug. I do my own research and listen to my doctor. I'll take Ty until I come to the conclusion that it either isn't working anymore, or they have something better (like an effective pill).

There are plenty of subjects that don’t interest me either. I normally just don’t follow those threads.

Nailing these numbers is not about “the debate” over who is right or wrong. Frankly, even I couldn’t care less about that. This discussion is about giving people the information they need to make fully informed decisions . . . no matter WHAT the number is.

When weighing up this drug, I'm betting almost everyone at least considered the 1:1000 odds (over a mean of 18 months) of getting PML. That might not be considered too big of a risk for some people (and/or their doctors), yet for others it definitely IS enough to deter them.

Those odds might increase to 1:500 or 1:20, and I would suggest that might make a difference to many people, even some that are currently on it. Personally, I would not choose Tysabri at 1:1000 (or slightly more), but if the odds dropped considerably, to say one in 6000, 35,000 or 50,000, that very well could matter to my (and likely some others’) decision.

There are people on the net that are suggesting that “there are only 4 cases of PML in 35-odd thousand people now (or "1:6000", so no need to worry)” and/or some of the PML cases “don’t count, because .... blah, blah, blah”. That is misleading, IMHO, and may give people a false sense of security.

Considering the interest in this information (by patients, shareholders, etc.), I would think Biogen would be updating us regularly with exactly how many people have taken this drug for longer than 18 months, and the number of confirmed (not to mention unconfirmed) cases of PML. But, I suppose as long as everyone “thinks” they know, and those assumptions look good for the company, they have no motivation or obligation to clarify any misunderstanding there may be.

I am interested in clarifying this once and for all, so we have a starting place to “build on” for future announcements on numbers . . . But for those who “don’t care”, please feel free not to follow the results of our discussions with Biogen.

Cherie