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Posted: Tue Aug 24, 2010 10:10 am
by msmything
Thanks Dave! I'll look that up..

To continue the thread, The northwestern trial has 2 active arms, the other arm is 'wait for it' TYSABRI....
Also the NW is Hermopoetic....it seems the Cleveland Clinic one is Mesenchymal...don't know what the difference is once it's supercharged...

Also, since the Cleveland Clinic doesn't have the tysabri arm, I wouldn't have to wait until I'm totally weaned off of prednisone, the level I'm at, about 7 mgs /day if OK with them.

I have to run off to work for a couple of hours, I'm going to do some serious homework on the Cleveland trial when I get home.

Get this, my job function now relies on being able to draw blood from our ER arrivals for lab purposes. I have to pass my 'live' trial today. My hands shake on a good day, intentional tremor has been constant for about 8-10 years, I'm as nervous as a whore in church. I was gonna ask you guys to pray for me but somehow that seems inappropriate after that last sentence...whadya think?

It IS indeed time for a big step, 6 or so new lesions a year and the concommitant loss of ability is not acceptable, the risk of PML I think would have me being a basket case.

Posted: Tue Aug 24, 2010 11:39 am
by Lyon
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Posted: Tue Aug 24, 2010 2:22 pm
by rainer
MrSuccess wrote:rainer - suggesting that Tysabri is viable treatment - knowing full well the horrific brain disease that some patients have reported - after taking Tysabri ..... is irresponsible :twisted:

A risk I would NOT consider.




Mr. Success
To not consider it because of PML is fine and your decision.

Stem cell transplants and HiCy also carry significant risks and neither has been as well documented as Tysabri in terms of those risks.

I do not think it is remotely irresponsible to suggest being objective and looking at the numbers. There is a chance you will get in a fatal car accident every time you get in a vehicle and yet all of us still do it.

Posted: Tue Aug 24, 2010 5:19 pm
by msmything
with regard to CCSVI, please see an article on medscape called 'Is CCSVI a viable option for the treatment of MS'

The author makes VERY valid points, particlularly with regard to the fact that there has been no peer reviewed science published, but ALOT of press.

Medscape requires membership, so I couldn't send a link, membership is no cost.

I'm calling Cleveland Clinic in the AM, unfortunately they are only enrolling 24 pts for phase 1. Maybe I'll get ;ucky!!!!!

Posted: Tue Aug 24, 2010 8:41 pm
by MrSuccess
comparing Tysabri risk and automotive risk ........ is like comparing puppies to cucumbers...... :wink:

I'll get on any boat , train , plane .... or car ......... before I would take T and it's documented risk.

:idea: medication is suppossed to make you better .... not kill you .. :idea:

I'm betting the farm ....... on CCSVI .

I'd even take a chance on a stent ...... before I would put that T crap in my body .



Mr. Success

Posted: Wed Aug 25, 2010 5:55 am
by patientx
msmything wrote:I'm calling Cleveland Clinic in the AM, unfortunately they are only enrolling 24 pts for phase 1. Maybe I'll get ;ucky!!!!!
Good luck. Let us know what they say.

Posted: Tue Mar 22, 2011 7:48 pm
by georgegoss
A compilation of the current Autologous HSCT info and the curative efficacy for MS. . . . .

http://themscure.blogspot.com/2010/06/s ... rence.html