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Happy Christmas

Posted: Fri Dec 24, 2004 9:29 am
by bromley
Dear all,

Hope you all have a Happy Christmas (sorry if this offends US users, but this 'Happy Holidays' thing doesn't do it for me. All religions have their special days so why should those who follow christianity shy away from naming religious festivals?).

This period is usually associated with hope for the future. Let's hope the new year brings some hope for ms sufferers. It might be useful if we could put together a calendar for the new year highlighting dates when trial results are expected. Aimspro results are due out mid-2005 (and the Aimspro trials for optic neurosis should be out any time). But there must be other trials due to report in 2005). Tysabri second year data should also be released at some stage. New (and hopefully better) treatments are the things that give us hope for the future. On this note, I think we need to be a bit more positive when trial results are published. We all know that drugs companies' are in it for the money but there does seem to be a tendency to trash every bit of trials data that comes along.

I'd like to thank the younger ones who use this site. Being diagnosed at 39 felt like the end of the world (and still often does), but hearing of those diagnosed at 13/14 etc is humbling. I think you are incredibly courageous and wish you all the best.









Bromley

And the Same to You and Yours

Posted: Sat Dec 25, 2004 8:44 am
by flora68
Thanks, Bromley! Merry Christmas to you and yours, too. And I know we all join you in hoping for more definitive progress in our fight against MS, as soon as possible :) .

I'll bet you'd also be very gratified if this next year brings solid news of at least one honest-to-God, scientifically inscrutable study on LDN, that strongly supports it's use by MS patients. Wouldn't that be great?

And I love your idea about creating an online calendar with MS-relevant information, like the dates when research results are expected to be released, etc. Great idea :idea:

Maybe the calendar could also have a few landmark dates in the history of MS treatment thrown in, for perspective. I find it helpful to occasionally remind myself that millions of other people have been dealing with the frustrations and uncertainty of this disease throughout the ages, but only very recently has there been anything at all for anyone to take for it.

And of course the CRABs were a huge breakthrough, although less-than-ideal with only about 33% efficacy. With that perspective in mind, I'm extremely grateful to read that we have new therapies, like Tysabri and probably LDN, etc., that appear to be twice as effective as those more troublesome CRABs.

Which, if my math is right, means that we may have just gone from being only about 1/3 of the way to total control of MS (with CRABs) to being about 2/3 of the way (with Tysabri), right? Hey, one more giant step like that and we're there!

Posted: Sat Dec 25, 2004 9:30 am
by DenverCO
flora68,

That's the spirit! I always say, 'If you have to have MS, there's never been a better (more hopeful) time.' All of us get down about the disease, but we must stay as positive as we can. Attitude DOES make a difference in our prognosis.

There are dark moments when having a "terrorist" disease like MS seems like a fate worse than death. However, if we end up being in the MS population that lives to experience a cure, this could turn out to be the biggest gift of a lifetime. Think about how euphoric we will be over life's most simple pleasures. Remember the Sound of Music daughter who sang about brown paper packages tied up with bows, whiskers on kittens, etc.?My list is going to include power walking on ice in 5" stilettos and hanging out at the farmer's market on 100 degree days!

We're on the verge, gang! Here's to 2005 and phenominal results with Tysabri!

DenverCO