MS is a "used to be" disease. CCSVI is now.

Written in March, 2010

I have Multiple Sclerosis. I was diagnosed with it in 1994 when I was 37, but somehow part of me had suspected it for years. I can remember putting money into the box for research donations held by a man in front of the Hudson’s Bay store at Bloor and Yonge Streets in Toronto in the late 70s. As he handed me my plastic carnation pin, for some reason the thought, “I could have MS!” popped into my head. I have no idea as to why that happened. I was fit, strong, healthy, and kind of clumsy. Then over the next few years, time and time again it would feel as though my glasses were misaligned, and I would spend all kinds of time - sometimes days - trying to adjust them, until they were finally sitting properly. Now I realize that this was to do with the MS, but I had no idea one’s eyes could be affected.

In the early to mid 80s, I was falling a fair bit, but that happens to all of us, right? One particular time in Toronto I was climbing the stairs to street level at St. Patrick Station on my way to work. I stumbled and fell amongst all of the other commuters. A little embarrassing, a little painful, but also kind of mysterious because again this little voice, “I could have MS!” I recounted this to my son’s father because it was so peculiar, but he just got mad at me for even thinking such a thing.

Over the next few years, the falls and the glasses problems continued, but it was a fact, and nothing to worry about. In the summer of 1993, my son, husband and I went on a vacation through some of the Blue Ridge mountains and hilly areas in Tennessee. We decided to climb a mountain to its peak, having driven as high up as we could go, but I became too winded to get very far. It was time to get in shape!

Shortly before March Break the next year I had bronchitis for the first time in my life. During March Break we made day trips here and there. On one trip we went to the Royal Ontario Museum and I started to have some trouble with my legs. We went to Ikea, and I tried to leap over some bollards but just ended up with bad bruises and a limp. By the time the week was over, my right leg went numb, and I had awful needle sharp pains in it when anything would touch it. It’s kind of hard to describe something as being numb yet able to produce pain with a mere touch. I went out and bought a pair of sweat pants to wear to work even though I worked in an office. I couldn’t stand to wear anything remotely abrasive, and if my miniature schnauzer jumped up on my leg it was excruciating.

After dragging my right leg around, and favouring it for 3 or more days, I decided I’d better see my doctor. He checked me over after listening to my story, and he seemed to be more worried about all of the bruises (he thought my husband was beating me, but such was not the case). He sent me to a neurologist ‘just in case’. By November, the MRI had been performed (lots of other stuff happened too) and I was officially diagnosed with MS.

MS was the better one of the two diagnoses I’d given myself through research - the other possibility (in my mind) was a brain tumour.

So, why have I written all of this down?

  • Because in 1994 there was nothing one could do for MS. Mine was of the Relapsing Remitting (affectionately known as RRMS) variety. It wasn’t until 2003 that my neurologist thought I should try Betaseron - an injectable and very expensive drug that was helping some people with MS. I gave it 8 months, and the neurologist agreed that I might as well not continue.
  • And because in 2009, Dr. Paolo Zamboni of Italy revealed a possible treatment for MS - one that he had tried on his own wife, and that made it so she could walk again. It is now March, 2010 and the MS community is so excited about the “Liberation” treatment, which unblocks or straightens out the jugular vein, allowing ‘trapped’ blood and iron deposits in the brain to flow out again. But we as MSrs are hitting road blocks when we ask about getting the Liberation procedure in Canada. Some blame ‘big Pharma’ who have the MS Society and maybe the government in their pocket. Heaven forbid there should be a drugless solution to help free those of us with this mysterious and incurable disease, heretofore referred to as MS, now being called CCSVI - Chronic CerebroSpinal Venous Insufficiency.

I’m now almost 53 years old. I have been robbed of my strength, my job, playtime with my now grown son, my balance, and my way of life. My family doctor saw fit to not renew my driver’s license in 1998, but in 2003 my neurologist said there was no reason for me to not have one, and so I got it back again. I have moved from RRMS to SPMS - Secondary Progressive. I suppose the last stage is Chronic Progressive, or CPMS, but I don’t know if that happens to all who continue to decline or not.

So, I’ve been aware of living with this MonSter inside of me for 16 years, and each year I see something else leave my realm of ability. I must now use a walker anytime I go out, and for the most part, indoors too. But I am one of the ‘lucky’ ones. Some of us go downhill much more rapidly. There is a small but dedicated MS support group in my city. At its ‘heyday’, we had close to 20 members. In less than 10 years, four of our members have died of MS complications. MS won’t kill you, but what it causes to happen in your body can.

Dr. Zamboni’s Liberation procedure offers hope for people with MS. Hope where there hasn’t been any before. Liberation could free up those in the early stages of the disease, and maybe bring some degree of relief to those of us in the more advanced stages. Why is it not being performed on MS patients? People are going to other countries like Poland, India and the USA for treatment. Why has our government not moved on this and said, “YES! You deserve a chance at a more normal way of life. You need Liberation - it’s within our grasp, and we’ll let you have it.” Some of us are spending our life savings to leave Canada and get help in other countries. That's just not right.

Meanwhile, we wait. We carry petitions with us and ask our friends to do likewise. We commune on Facebook to see how to apply pressure to the government and the MS Society. Trouble is, we don’t have the luxury of time to wait. Every day with this disease we decline a little bit (or sometimes a lot) more.

Don’t make us wait any longer. We need Liberation now. It might or might not work, but that is a chance I’m sure we’re all willing to take.

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