What is our Purpose?

I first joined CCSVI Locator back at its inception because I am a firm supporter of Dr. Paolo Zamboni's vascular theory regarding Multiple Sclerosis.  Started by Ken, whose wife has MS, it was meant to be a place for MS patients to discuss CCSVI and find doctors that were providing treatment.

The excitement about CCSVI was high for about 2 years but as with any new medical discoveries, reality eventually sets in and this excitement waned.  Dr. Zamboni never claimed it as a cure for MS but rather stated it was part of the pathology.  He also said that it needed to be studied much more closely.   I have always strove to remain realistic, and while I was treated for CCSVI I also listened to what the good Italian doctor was truly saying.  I never thought I'd leap up from the table and be normal as I was before.

Here we are in 2014 and 'CCSVI Locator' has devolved into a place not to discuss advances in the vascular theory, but rather the standard drug treatments that can be found adorning the pages of WebMD or the NMSS.  Drugs simply shoved at us as a way to help us live better or endure life with our disease but never cure it.  The same information that can be found anywhere on the web.   Drugs that have harmed or not helped my other MS friends.

Ken started this page as a place for hope and to help people.   Why I have maintained my membership to this page, was due to that hope.  Hope that we would continue to discuss the latest advances and discoveries (for better or worse) regarding CCSVI.  I had hoped to hear the latest news.  Even information about stem cells research, combined with the procedure, which I also believe may help in reversing disability.

Yet, here we are discussing Tysabri, Techfidera and the same standard drugs somehow believing a pharmaceutical manufactured substances are the answer to our MS.

Some of you may be fully in support of using these drugs or cycling through different ones to find one that may help you.  And I believe each person should do what they feel is best for them.  However, seeing damage done to dear friends and death due to drugs, as for myself, I am not in favor.  More power to those who believe or put hope in them.

I am sincerely at a crossroads, belonging to a group called "CCSVI Locator" which no longer has the goal of helping people to find doctors or reporting on advances and discoveries made regarding CCSVI.  In fact, this page has little do do with CCSVI and probably should have its name changed.

Personally I did not have the best experience with my CCSVI treatment, but that ONLY means to me there is much more to the theory that needs to be studied.  I had hoped to find out what was going on here, at a page that touts CCSVI in its title.

I had hoped to find out the latest news and developments on vascular theories, at a page that touts CCSVI in its title.