Dear Editor:
Our hospitals are overtaxed as it is so let us lessen the burden any way we can.
On Nov. 21 lives were changed dramatically and although we knew this was big news we did not know it was going to be so very big.
On CTV’s W5 we watched this very enlightening report about how a Dr. Paolo Zamboni in Italy thinks he has discovered a cure for multiple sclerosis. Now Dr. Zamboni has treated about 120 patients (his wife included) all with classic symptoms of multiple sclerosis, relapsing, remitting and progressive MS with very good success. And it appears the sooner after diagnosis the treatment is started the better the results.
So far I have been devoting my morning every day since I’ve seen that report on TV to discovering all I can about this mysterious disease called chronic cerebral spinal veinous insufficiency or CCSV I as it has come to be known, this syndrome was first discovered 30 years ago by an Austrian researcher but there was no way he could prove his findings as there was no ultrasound, no MRI, no Doppler none of these fancy tools we have today. This report was placed on the shelf and not looked at until just recently when I am sure that Dr. Zamboni read that and a light came on. Of course those of us in the MS community applaud his efforts and can hardly wait for the day when we get called to be treated with this miracle cure. That day is a long way off as this is a sea change in the way of thinking in neurological circles.
There is a little-known condition that occurs among anyone who is told that there is a totally new way to look at anything, it is called the Semmelweis reflex. “The Semmelweis reflex is the automatic dismissal or rejection of scientific information without thought, inspection or experiment.” This is exactly how many medical doctors and neurologists treated this finding.
I was hoping my group of professionals was a bit more open minded and they may turn out to be yet, but at the moment there is no dancing in the streets, definitely not by me since I am tied to this wheelchair by a drug-based health care system that will refuse to listen to an alternative that does not rely on drugs of any kind.
Of course the MS societies are all taking a very cautious approach to this as they have invested many millions of dollars into research into drugs and treatments that only address the symptoms and not the cause. Knowing that there is endless money in research but not a lot of money in the cure does not arouse a great sense of well-being for anyone with a chronic disease. Of course we knew that the cure for M.S. would be found someday, we just did not know it was going to happen with such a lot of fear from the companies that are going to lose their goose that laid the golden egg.
A cure may have been found today but dishing out the treatment will take many years because they are afraid to admit that they were looking for gold under the wrong rock all along. I kind of equate this to a man sitting in a dark room and afraid to get up to turn on the light switch because he thinks the light bulb is burned out, What’s the harm in trying?
There have been thousands if not millions of angioplasty treatments dished out in the last 20 years and most of them with very good results, of course speaking apples to apples this was on arteries and not veins. Blocking an artery will kill you or cause pain , damage and possibly death whereas blocking a vein is common. Haven’t we all had our arm or leg fall asleep at some point? Once you allow the blood to flow again the feeling soon returns. Of course this is oversimplified and does not address the underlying reason for the scarring in our brains, which is an overload of iron, but it’s sure a good start.
That being said, it is not totally just the fact that the blood cannot return that is causing the problem, it is the fact that the returning blood loaded with iron is allowed to sit against the brain longer than it was designed too.
I can just see them coming out with a new drug to stop the iron in your blood from being absorbed through the blood brain barrier, talk about closing the barn door after the horse got out again. But you do have to protect your interests, yes but what about our interests? Sure there is many analogies that come to mind but I think I can speak for all of us with MS — analogies and platitudes be damned. We just want to get treated and get on with our lives. You would do the same for someone having a heart attack due to plugged arteries, well our veins are plugged and while that doesn’t kill us, it makes us wish we were in a different boat. At least while having a heart attack you can have an angioplasty paid for by the government.
I think it is well past the time for the thousands of us with MS to get our lives back and get jobs, finish raising our families and stop being a drain on the health care system.
Reg Kreil