When I was diagnosed in August, 1990 with Relapsing/Remitting Multiple Sclerosis and at that time there were no treatments available. I had several bad “attacks” involving extreme difficulty with any kind
of movement and 10 months of double vision–along with several other “weird” symptoms and a spastic bladder.
By the time Betaseron was approved, I was considered “Secondary/Progressive” and, therefore, didn’t qualify since it was only acceptable for “Relapsing/Remitting” which is the same for all subsequently approved drug treatments. There was still absolutely no treatment available for me.
In November, 2009, I was told to watch W5 because they were doing a story about something that might help MS. I was skeptical because I’ve heard about “miracle cures” before that turned out to be useless. But when I started watching the show I quickly yelled to my husband to come and watch because “this was different”. The theory of CCSVI made so much sense.
When I mentioned this theory to my neurologist at the end of February, 2010, I thought he would be excited and would want to get me tested right away because there was no other treatment for me–but he advised that more study was required. When I asked my general practitioner for a referral to a vascular specialist, she advised that no one in Canada is doing vascular testing for this. I later found out that meant no testing or treatment for people with MS. This kind of testing and treatment is done regularly for dialysis patients and others but not for me because I’ve been labeled with MS.
I got tired of waiting for treatment to be available in Canada and went to Seattle on March 17, 2011 for a venogram at Vascular Access Centers.
It was easier than my latest trip to the dentist for fillings! The fabulous Interventional Radiologist found 50% blockage in my azygos and both jugulars were 90% blocked. Everything was ballooned, which I must admit hurt a bit–but only for a few seconds–and no stents required.
Over the next few days there was no doubt that my balance had improved and my drop-foot was dramatically better. I was thrilled with my mobility improvements and promptly had my husband make a video to show off that I could stand without hanging onto anything and could walk without a mobility aid—not very far for healthy people but a monumental distance for me!
It has now been more than 6 months since my treatment and we made another video to talk about some of the improvements that aren’t “visible”—heat intolerance gone, no more weekly headaches, no dizziness/nausea with head movements, and much better emotional stability!
I also wanted to express my gratitude in the video that even though not all of my symptoms have improved and I am still “disabled”, I am lucky to have obtained many improvements that have made my quality of life so much better. I can once again carry a cup of tea without spilling it!
I just wish that everybody that wants to could have the opportunity for this treatment–hope is supposed to be a good thing!