It began with a wave of hope and a strong wish -- could we be the last generation of people with multiple sclerosis? Of course, this sentiment wasn't what neurologists or politicians or even Dr. Zamboni himself wanted to hear. But we heard it -- this voice that kept asking "What if this is the end? Could we be the last generation of people with MS?"

Over time and through the observations of members of our CCSVI family who sought early treatment, we shifted to think if this wasn't an all-out cure for MS, then it certainly is the best therapy for symptom relief the world has ever seen. We know this in our hearts and many of us who've been treated feel it every day.

So, what do we say to the next generation -- our children? What would you say if one of your children has neurological symptoms, but no diagnosis of MS? Are we going to see the start of The CCSVI Generation?

Well, I am in exactly that position. My son, Jon, was evaluated 10 years ago for something the neurologist eventually called “Benign Fasciculation Syndrome.” Huh? We were told by two neurologists who knew my history “this is absolutely not MS.” Many of us have heard that one before, unfortunately.

So, when I saw Jon, who is now 28, at Christmas and saw that his twitches had grown worse in the past few months (I can’t call them spasms, like I used to have, but they are definitely movements), I said to my husband we need to see if Jon wants to be evaluated. As a mother, I had to know if I had passed on my twisted, sick veins to my child and if he could be helped by the same treatment that brought me so much relief. I remember my early MS years when doctors told me I was healthy despite numbness, bladder retention, vertigo, and more. Neurologists included, they told me there was nothing wrong. One neuro me, literally, to "Go fishing." He clearly thought I had a mental problem and just needed to relax.

When I asked Jon if he wanted to come with me, he said he was already thinking about getting a test done. I was scheduled for retreatment in February and, because I needed someone to accompany me anyway, Jon decided to come along for the ride and have an MRI/MRV.

His test was yesterday. We got the results today.

How does it feel to hear the words that your child’s veins are stenosed? It’s such a mixed bag of emotions, I don’t know quite how to express it. Jon has irregular, turbulent flow in his right internal jugular vein. Snap, just like mom. Jon’s left jugular is almost completely stenosed with little or no flow. Snap again.

Jon does not have MS, at least, he has never been diagnosed with MS. We are going to receive that part of the MRI results in the next day or so.

What would Canada do with such a finding of positive for CCSVI and no MS diagnosis? I’m not sure. I know what I did as his parent, and that was to get him to somewhere where he could get any needed treatment as quickly and as skilfully as possible. Sadly, that wasn’t in Canada.

Why isn’t this in Canada? Will we still be waiting for it and watch more of our children get ill? How can our children who don’t have MS get tested and treated if they show signs of CCSVI? Jon has these twitches and poor circulation (very poor) to his gums. Other symptoms are emerging. Just because the symptoms are neurological does not mean the cause isn’t vascular.

I am scheduled to get Dr. Arata to fix my pesky left jugular vein, which never responded to ballooning the first time, later today (Thursday) at 12:45 p.m. Jon follows me into the operating room, again with Dr. Arata, at approximately 2 p.m.

I am nervous, excited, nauseous, happy, sleepless, strong, weepy, and confident. I guess, I am just being a mom.

Wish us luck!

~Sandra 

Thoughts, too, for Colleen, who is getting treated in the morning and Brenda, who follows Jon, and for Greg, who couldn't join us. We are celebrating no matter what tomorrow night. Celebrating life...and good friends. On that note, love to all my CCSVI friends! I’ll update you after all is done!

http://www.facebook.com/notes/ccsvi-at-ubc-ms-clinic-information-and-support/a-mother-and-son-journey-step-1/10150090456692734