Lyon - video

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Lyon - video

Postby bromley » Mon Jan 28, 2008 1:57 pm

Bob,

I'm glad to see that my threats to ban you from this site have resulted in a dramatic reduction in the number of your postings (reduction of c.30% - the equivalent of a CRAB drug).

I attach a video for you to watch. I don't have 12 minutes to spare so would be grateful for your summary of the main points. So when you get home tonights, no porn videos, no Dukes of Hazzard videos etc, just watch this one.

http://www.cbc.ca/national/blog/video/h ... ies_1.html


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Postby rainer » Mon Jan 28, 2008 5:13 pm

WOW 8O

much better then porn imo :D

This makes me wish we could borrow the US Defense Dept budget for a year to try and make that procedure safer.

I do wonder/worry if rapid decline is easier to reverse then a slower descent.
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Re: Lyon - video

Postby Lyon » Mon Jan 28, 2008 5:29 pm

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Last edited by Lyon on Tue Nov 29, 2011 7:39 pm, edited 1 time in total.
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Postby rainer » Mon Jan 28, 2008 5:50 pm

I wonder if there is middle ground in rebooting the immune system because I have read from organ transplants that people can come away with an immune system that is characterized as being mixed b/n old and new. What if you did a series of transplants like this where you knocked down the immune system but didn't completely nuke it...
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Postby Lyon » Mon Jan 28, 2008 6:54 pm

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Last edited by Lyon on Tue Nov 29, 2011 7:39 pm, edited 1 time in total.
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Postby DM » Mon Jan 28, 2008 8:40 pm

I should have read this thread last night. I had my 2 month check up with Dr. Freedman this morning. I could have prodded him for some additional info.

I am on terifunomide, an oral drug in its thrid phase. Don't know what the first lady is on but how many oral treatments are there in clinical trials?

I spoke to one of Mark Freedman's patients who had this bone marrow procedure. I was chatting with her awaiting my bi-weekly blood procedure a couple of weeks ago. She swears by it, and feels alot better, walking and doing all sorts of stuff. It was not the lady in the video but I am sure I will bump into her (not literally) sometime in the future, since we visit the same clininc, and Dr.
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Postby sh8un » Tue Jan 29, 2008 12:25 am

Wow...this is all so great. Not much that is new with Freedman but I guess now they have 18 ppl in the trial. Last I heard there were 15. That's really good. DM...can you please tell us more about your trial and how things have or have not changed for you?
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Postby DM » Tue Jan 29, 2008 6:52 am

Sh8un

I posted my experience in the drug pipeline forum but here you go. Only had one episode in Nov 2006 for three weeks that was a minor inconvenience. And it was gone as fast as it came. After many tests, Dr Freedman said I had MS. The clininc here in Ottawa called me last AUgust, and by November, I was on this drug. Dr. Freedman cannot determine whether I am on the placebo or not, but in any case, no side FX, nothing good or bad to report. I am, and feel very normal with an EDSS of 1.0. I pop a pill every evening and that is it. I wish I had more to report but I do ot find anything different about me or what is going on. Fortunately, I feel 100% normal, and if you met me, you wouldn''t even think I have MS. I am an excellent candidate for this drug trial since I am not seeking a magic solution to rid me of MS because except for the MRIs and LP, I am doing great. Will this change as time goes by, who knows, but if this drug proves worthy, I strongly believe that it will be a GODSEND for all those experiencing MS. One small simple pill, taken daily, and no needles or sidefx.
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Postby Lyon » Tue Jan 29, 2008 7:07 am

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Last edited by Lyon on Tue Nov 29, 2011 7:38 pm, edited 1 time in total.
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Postby robbie » Tue Jan 29, 2008 7:54 am

but enough history with the disease to know what her course would have been otherwise.

Was your wife really having a hard time before the trial?Is it possible that the cause for the immune system to malfunction is introduced from some where other than the immune system itself and getting rid of it wil only see it come back in the new one, not when it's fresh and new but after time.
Had ms for over 19 years now.
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Postby sh8un » Tue Jan 29, 2008 8:54 am

Thanx DM...sorry, I never saw your post beofre this. I am glad that you are doing well.
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Postby DM » Tue Jan 29, 2008 9:20 am

And I thought that I was #20 here in Ottawa on this trial.
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Postby Lyon » Tue Jan 29, 2008 10:31 am

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Last edited by Lyon on Tue Nov 29, 2011 7:29 pm, edited 1 time in total.
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Postby rainer » Tue Jan 29, 2008 5:06 pm

I'm not sure I completely understand what you're getting at, but like cancer chemotherapy, effective "rebooting" hinges on completely eliminating the factor(s) responsible for the ms process, or it's just a matter of time before the stragglers multiply to become a problem again.


I was thinking along that route, except that with each immune system knockdown you introduce new bone marrow stem cells into the immune system, and are marginalizing the ms part of the immune system more and more. But perhaps biology and medicine has already proven this isn't the case.
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