This Is MS Multiple Sclerosis Knowledge & Support Community

I see that the study is up at clinicaltrials.gov, but has anyone heard from them yet as to when they are starting the study? I'm hoping I'm high up on this list as I know I am wayyy down Dr. Sclafani's list.

I am also waiting for the irb approval for Mehta's study. February has turned into April and I am growing old. I am frustrated.

kc

Add me to the waiting group. Though I probably applied later than either of you because I was not even given an approximate time-line.

I'm waiting too and more than frustrated..... what the hell is taking so long??? I'm visuallizing IRB committees going back and forth over minute details and wasting time... I know it's for our own good, but I need a shot a some relief from this relentless crap NOW!!!

Wondering if JUNE is going to be the magical month, because I think that is when the MS Society (North America and Canada) will announce the winners of the ccsvi study proposals (only 100k per year for two years)?? I believe October is when they announce the yearly fully funded studies.

I'm just guessing here so if anybody else has more info., I'm all ears.

I'm hopeful that when trials start, we'll all have the opportunity to get tested / treated..

I believe we were all told "possibly" April for Metha... getting old and decrepid waiting too.. I have "zero" energy left to "go local" - been there, done that and struck out .. I'm so freakin tired (literally), I can't stand it.

I heard from Megan in the last couple of days. Progress is still being made and they'll be starting soon. It still depends on an IRB, I think.

Has anybody heard anything from Megan regarding their place in line? or if they have officially been accepted? I applied a while ago but haven't received anything official. I am growing a bit frustrated too. I am in year five of my MS Dx (pp). The last six months have seen things really get worse for me. I'm waiting.............

frijkaard wrote:Has anybody heard anything from Megan regarding their place in line? or if they have officially been accepted? I applied a while ago but haven't received anything official. I am growing a bit frustrated too. I am in year five of my MS Dx (pp). The last six months have seen things really get worse for me. I'm waiting.............

Nothing official yet here either..

I asked Megan the same question a couple weeks ago (where I stand on the list).. all she mentioned was that she received my info. Feb. 1st.. I haven't a clue what that means tho and she didn't elaborate - I didn't press things either..

Falling apart too.. I'm on TYsabri and my neuro. gave me a holiday after 26 infusions - I quickly went down hill.. back on after 6mths break and have not really recovered...

I'm out of treatment options at the moment.. ccsvi is all I have to look forward to and it may not even help... still have to try tho.

I really like the idea of a clinical trial.. at first I simply wanted treated, but have reevaluated this position. The follow up care is what is most appealing to me... re-checking for stenosis and re-treating if necessary since they are only doing angio (no stenting).. being followed for two years will be invaluable.. not only data-wise for future sceintific value, but in our overall health.. solidifying this as a viable and widely accepted treatment option for all stricken is IMPORTANT, but think of those who have been newly dx or perhaps the countless thousands who have yet to develop ms .. they have a shot at NEVER progressing... This is huge...

Anyway, from clinicaltrials.gov they are taking 500 subjects which is great... not only that but they have over 20 docs listed on staff albanyvascular.com .. so I hope they can treat a bunch of us at a time as opposed to one dr. being overwhelmed by the demand.. lets hope anyway!!!

I have a feeling Megan's phone will ring off the hook the second sombody posts being contacted... If nothing else, It'll be great to follow the progress as positive reports warm the hell outta my heart.. we all need some of that

The last email from Megan was on March 9, where she states they're still waiting for Institutional Review Board Review approval to begin the Liberation Study
Once that's approved, they "plan to more forward with scheduling patients."

That's all I've got for now.

Hope its soon !