Rocky Mountain MS Center videos

[ru4cats]

I received an email a couple days ago from the RMMS center with links to videos from a Nov. 2011 conference. I watched the segments of Timothy Vollmer yesterday and thought others might find them interesting. Here is the link:

http://www.mscenter.org/videos

In regards to Tysabri, he says if you are JC-, it is still the one to choose, if possible. He does discuss all the therapies available for MS, current and future, and basically says the future looks bright for the new drugs in the pipeline. I'm still working my way through them all.

[0485c10]

Thank you for finding and posting it. I'm rather speechless, overwhelmed by just listening to Dr. Vollmer segments. i suspect i will need to mull on it and listen to it a few more times.Maybe the whole confrence? i think the jcv test is even more important to my knowing than i thought it was, i have a gut feeling i am jcv- which complicates things for my analysis just 1 more piece of the puzzle in a few years of information gathering.

[0485c10]

Very Good. Some interesting things that jumped out at me,

the 2nd from last video, dr.vollmer just did a recap on his paper i was so impressesd with. "it's just the tip of the iceburg"

in the paper he wrote for most people MS shuts down some time in the late 50's early 60's. In this video he added 10 years to it, ms just naturally shuts down between 60-70. In the future ms meds will stop about that time--he threw out no relapses in 2 years. When i spoke to my doc she threw out 4 years. Wish i was there so i could just ask questions on that! My plan is to not have to take an ms med for my entire life.

and big in this video was med treatment options not only being evaluated by reduction in relapse alone--a younger person while their ms is still very active, wil be interested in a med to target relapse reduction.

meds will be evaluated on brain volume preservation...for instance laquidimid only reduces relapses/ lesion by a small amount, i think 36% compared to tysabri 60%, some may be looking for relapse reduction and some may be looking more for brain volume preservation. laquidimid is good(sound like the best) at that. Still not on the market,will be soon.

I'm not so concerned about relapse reduction, i know i'm later stage MS, not yet at EDSS 4(SP level),hopefully i will never get there(10% don't)---but i am getting older and i'm losing brain volume just from normal age but because i also have MS i'm losing it faster than just normal age. i would be looking less for relapse reduction & more for brain volume preservation. (my opinion)

When diagnosed i read that MS decreases a life span on average by 6 years with the note that the data was determined before ms meds.

they said here that MS has no effect on life span with the ms meds.(that was interesting, i was not sure if putting a ms med in ones body over years to control MS symptoms would reduce life span from just from the med--apparently not)

and he said that for a person jcv- using tysasbri and getting the jcv antibody re-test yearly, there is less risk of using tysabri than an interferon( i forget which one he said?). more than copaxone as copaxone is the safest of the ms meds for side affects..

[ru4cats]

As always, great insights! Now I need to go back and listen to the videos again. Since I'm now 60+, does that mean my MS is shutting down? I did ask my neuro about this at my last appt., but she didn't agree with this idea, at least that's now what she's seen in her practice.

[0485c10]

I wish i was there to ask questions--i just got done looking at the site to see if there was a snail mail address to ask question...I guess because i was so influrenced by the article "it is just the tip of the iceburg", i have always subscribed to the theory one is ms is not treated for what it is now but for what it will be when a person is 65.

i always kind of thought ms treatment was like surviving a storm but then moving on..to post storm activities. preserving brain tissue through the storm.

the discusion of brain tissue preservation treatment sounds like post storm activities too.

personal opinion is ms treatment is ramped up to get to a zero state as he said---but there no financial benefits to finding out when it can be ramped down...i'm not sure i think an on/off strategy but like a controlled procedure(similar to "controlled" bankruptcy as was the reason given for the auto bailouts) to ramp down to treatment needs to maintain zero state. that procedure may be age dependent--imo i think that's what they will find in the future.. there is no financial benefit for a drug manufacturer to pay billions$ to find that out. i think that would be a good for study to be done and published - that kind of study does not need to gain FDA approval..

as he said in the video there is a huge need to determine an accepted procedure to use drugs off label & not require billions of dollars to be spent to get anything approved..

[jayjee]

I'm about to turn 73. MS has not shut down for me. Neither has cancer. But I'm still plugging along.

[0485c10]

How do you know jayjee are you still gettting relapse while on your med? when was the last tine you stopped your med to find out if you still where having relapses? when was the last MRI that showed new lesions? Just curious--i'm suspecting you don't actually know if your ms is still actively producing lesions-relapses? the meds only slow relapses,doesn't treat other MS stuff. so taking a med to slow relapse/lesions may not be needed after a certain time...i agree with Dr. Vollmer on this one. other meds are needed then.

[christiecanes]

I would never miss an opportunity like. Thanks for all the information posted in this thread! ** URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**