Reminder to neuros

TwistedHelix · Posted: Fri Mar 09, 2007 8:56 am Post subject: Reminder to neuros

I'm a bit hesitant about posting this because it's about those of us at the extreme end of the MS spectrum. Please remember that it's very, VERY unlikely to be you or to paint a picture of your future, but until we are finally rid of this disease, (which won't be too long, I'm sure), it's just a reminder to neurologists that while we are waiting, we have to live a life, and some of us need a little help with that.

tinyurl

Dom.

Lyon · Posted: Fri Mar 09, 2007 3:22 pm Post subject:

Thanks for your consideration Dom. You're a good guy!

I couldn't agree more with your point. If MS'ers are going to spend time on a movement, I think it should involve relaxing legal and medical situations so that people in the later stages of ms have more say in what they want to consider their options actually becoming options.
Bob
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Wife diagnosed with RRMS in Feb. 2006.

ClancyPavillion · Posted: Fri Mar 09, 2007 6:12 pm Post subject:

That's a great link... do you follow that group often? I understand your hesitation to post because of your spot in the spectrum... but the truth is, we are all on that spectrum with you and want the best for people at all ends. I look forward to reading more on this soon.

Nice to be of your aquaintence!
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"Some women aren't meant to be tamed... we are meant to run free until we find someone just as wild to run with"

TwistedHelix · Posted: Sat Mar 10, 2007 10:51 am Post subject:

Thanks guys,

Bob,
I understood that in the US there is a "fast track" system where people with certain conditions can get experimental or non-approved drugs by signing a disclaimer. I don't think it's available here, but it sounds like a good idea.

ClancyP,
It's good to meet you too! It's not MY position on the MS spectrum that I'm concerned about, but I am keenly aware that there will be visitors to this site who are newly diagnosed or in the early stages, and the last thing they need to read about is something which might sound like a dire prediction of their future.
Just the opposite is true: it is a fact that, even if no one did ANYTHING about their MS, the chances are that they would never become severely disabled and there are so many new drugs, treatments, breakthroughs in understanding, dietary options and repair strategies coming thick and fast that I think we have every reason to be optimistic. I just thought it was good to see that those of us who drew the short straw had not been forgotten.
Great picture by the way... You look very happy!

Dom.