I share this short story with you because if you could see what I see you could not deny that there is potential benefit with the CCSVI treatment/procedure that is now available outside of Canada.  I think of my wife's and my story, first and foremost, as a love story.  The details I'll write about in the future and believe it is a story of love, support, challenge, pain, frustration, joy and so many other themes that is similar to many of yours.

My wife was diagnosed with RR MS about 20 years ago.  Disease progression and loss seemed to describe her course not unlike so many others who suffer from this disease.  She went through virtually all of the CRAB drugs with either strong adverse reactions or they just ran their 5 years.  Some benefits in the early days, I think, in terms of reduced number of relapses and still progression over the years.  Then when potential treatments ran out their was the symptomatic relief route - Neurontin/PreGabulin, Mirapex, 4AP and LDN for the pain, spastic legs, drop foot, etc.  Some clinical trials sprinkled in there with no benefit.  And still progression.

Last week, we travelled to Providence, Rhode Island for her to receive the venogram CCSVI treatment/procedure.  Our expectations were low as to not create inappropriate thoughts.  We thought we would wait a couple of weeks before we spoke about any follow up benefit.

We couldn't wait.  Within a day, we saw improvement in her 'jumpy' legs, urinary urgency, eyesight, balance, posture and overall look.  She moves differently after the procedure - with confidence, purpose and a lovely poise.  She looks different - in fact, radiant!  I know I may lose credibility at this point however, I will say it again, she 'looks' different - there is a 'sparkle' that hasn't been there for some time and she positively glows.  It reminds me a little of when she was pregnant with our girls.

We know many who have had the procedure, some have benefited while others have not.  Is this any different than the treatments that are available today?  With these treatments we see an approximate 1/3 of patients benefit with no additional benefit, it seems, after 5 years.  Once your through these, it's clinical trials or symptomatic treatment.

Anecdotally, this CCSVI treatment suggests 1/3 will have a very good benefit, 1/3 some benefit, 1/3 with no benefit and a rare few who might get worse.  To me this seems to be potentially better that what's currently available and, at least, warrant a deeper and more aggressive research approach.

I believe that patients will have the answers in Canada before the medical community does, unfortunately so.  Their medical role will offer insight in the future for what so many courageous individuals and families will have already done.  Too little, too late.  I see committees being formed to assess the benefit of research (the same committee participants again and again) without the insight of the patient and healthcare experience that sits outside of their domain.  Too much of an 'inner circle', too slow.  I see the MS Society scrambling to get a seat at the table - any table to which they can be seen to benefit patients and their families.  I do believe that their fundraising efforts have suffered dramatically by taking a back seat.  Too little for too long.

Regardless of outcome and because of our friends and family with MS, we will continue to support their right and access to alternative and better treatments - outside of the MS Society.  It is our hope that Canadian healthcare and the MS Society of Canada act in such a passionate and determined manner.  If inspiration is the champion of hope and innovation, it is time for our government to inspire a revolution in treatment.  Be courageous and challenge your own status quo.

For my wife and I, our love story continues and grows stronger every year.