Sunday, October 10, 2010

What are MS dragons

Hi, My name is Karen and I am a Canadian with MS. It appears I also have a serious case of clinical frustration.

I know that if you have MS, you have probably had to slow down too due to fatigue or uncooperative limbs. But the fight for a viable treatment requires that, if we want to get help in this millennium, we are going to have to set the speed at “WARP”. And we are going to have to behave with all the courage and determination of our great Canadian soldiers – they have a reputation for not giving up the fight (just ask anyone with a family member in the Canadian Armed Forces now or in the past.)

And who are the enemy?  Well, where should I start?  There are the doctors who misdiagnose our symptoms. There are the doctors who are married to the drug cartels………..oops!  drug companies. There are those who claim to be on our side but aren’t like the MS Society of Canada. There are the politicians who either do not know about MS or are disinterested. There are even more politicians who do know but play the Pass The Buck game, usually the Feds passing the buck to the Provinces or vice versa  The list of dragons goes on and on. If you have an MS dragon (enemy) you would like to mention, do not hesitate to add him/her/it in the comment section.

And who is soldiering with us? Well there are individuals all across Canada with MS. There are the concerned relatives of MS sufferers. There are some G.P.s who would like to help but are threatened by the more powerful specialists. There also are people who do not have MS but do have other conditions that are getting the same snow job as we are. Cancer patients for one.

And there is the media!  They have been very busy on this front. When Dr. Zamboni came out with his CCSVI theory, hardly a newspaper in the country missed it. And W-5 has been very good at keeping it in the foreground.

Are you feeling like a Reserve Soldier when you really want to be an active one? Me too! That is why I am starting this blog hoping to reach as many MSdragon slayers as possible. If we are going to win the war, we have to slay the dragons sent to stop us. We have got to be united, not just as Provincial  citizens but as Canadian citizens. If some argument  put forth by the folks in one province to the powers-that-be gets a positive response, share it. If it works in B.C. for example, it might work in Newfoundland too with a few changes to localize it. So Share It!!

The Placebo Effect

At our last meeting at John Purcell Place here in Ottawa, we heard from a gal who shared with us Dr. Freedman’s and Yves Savoie’s arguments for trials that include placebo treatments. In a more perfect world, perhaps we could be satisfied with this. But not in THIS World in 2010. If you are not sure what The Placebo effect is well, it is a useful tool most often used by drug companies and research groups to see if the good a patient feels is real or if it is just brought on by wishful thinking. If drug X is supposed to make you pain free with a situation that is pain filled, this is good. But if drug P takes away your pain and it was in fact just a sugar pill, that is not good.  That is the Placebo effect.

Angioplasty however, is not a drug.  It is a surgical procedure. They cut you open and put a balloon or a stent in a clogged artery or a vein to allow a freer flow of blood.  This is a lot more invasive than, “here is a pill and a glass of orange juice. Now down the hatch with them both.” If you run into trouble with a pill, there are most often, ways of reversing the effect varying from pumping your stomach to another but offsetting pill. Those of us who are willing to undergo the CCSVI procedure are well aware of the risks. We will also have had a doppler ultrasound beforehand and that will say whether we should go through with it or not. No clogged veins – no CCSVI procedure!

But Good God! We want to know there is a procedure taking place in the first place. If we are going to go out on a limb, it should not be broken before we even venture near it. These two men, who do not have MS, think they should be allowed to perform a surgical procedure of half of us that is designed to be a sham from the get go. How humane is that??  It isn’t. It is a form of abuse. If I die while they play pretend games, then what? Well, we are talking about doctors. Do you know of any Canadian doctors who have screwed up and then stood up and said, “I screwed up.” If you do know a doctor like this, go right now and nominate him for The Order of Canada. Hmmmm I do not see a stampede. Chances are they will cover up, lie, refuse to testify against each other and etc, won’t they? 

Hmmmmm We have gone from abuse to murder of some degree and I would push to have it declared 1st degree murder since it was planned and plotted out before hand. And to what end? Well the Provincial and Federal political and medical control freaks get to keep the status quo where they want it – with lots of money coming in and little or no medical results to show for it. You know……like the 60 some odd years of collecting billions world wide for cancer and still only some very iffy treatments, excising the affected body part all together or feeding us enough poison (chemo) to kill an elephant. Personally I have a hard time believing that we can fly around the Milky Way, sit at home and spy on someone halfway around the world, we can tell with DNA who raped who  but we cannot cure or at least find less abusive treatments for things like MS and cancer. AIDS, which has been with us a relatively short time is still around but they didn’t waste years doing placebo trials on the treatments either. We seldom hear of people dying of AIDS as we did back in the 1990s. Oh Gee! That could have affected our fine doctors and their sex lives so we put a rush on it.  We with MS however,  get to move from cane to walker to scooter to wheelchair to bed and finally to our coffins.

As I write this page I am listening to Dr. Freedman. And I am getting angry. He says, “Why would you fix something that has nothing to do with the disease?”  Well, because it is broken regardless of what it has to do with.  Works for me.

Does this mean if Dr. Freedman  was working on your brain and your gut started spewing blood, he would ignore it because it has nothing to do with what he is working on?? Would he just ignore it if he was fixing something to do with an optic nerve and a vein or artery nearby was clearly clogged, he would sew you up and ignore this other, but clearly problematic, vein or artery because it  has nothing to do with optics nerve? I sure hope not. I am on his patient list and this single minded attitude does nothing to give me confidence. 

And as I mentioned, this is 2010. We have MRI available. If the CCSVI treatment in fact hasn’t worked, the lack of change in one’s MRI would make it obvious without having to put some unfortunate through a placebo operation.  Yes! Dr Freedman used the correct word when he called it a sham.

The mention of MRI brings another thought to mind. If I have lesions on my brain, are they in the exact same spot on the next MS sufferers brain?  I don’t think so! If it was we would all have very similar symptoms and we do not. If you want to do some trials, give a bunch of us  CCSVI, then compare our pre-CCSVI results with our post operative results. MS is not a one size fits all condition and it probably will not have a one size fits all resolution either. Science is great! The world is much more interesting and, in some ways, so much better off because of it. But science should not leave logic out in the hall  and that is where Mr. Savoie and Dr. Freedman seem to be leaving theirs.

So How to slay the dragon

Well there are a lot of ways. The first is to keep fighting. Write letters to your M.P., your M.P.P., the newspapers, the TV stations. March with signs that scream out for relief for  MS patients. If you are writing someone in the Federal Government, don’t forget postage is free. In fact, if we could all write the same person in the same week, he/she would have to take notice.  Be polite but firm. I know how hard that can be when you are dealing with closed minds but try. Cursing and name calling will be used by them as a means of dismissing you. It never works. It does make me feel better though so I write my thoughts on Word and then go back and clean it up before sending.

Right now The Globe and Mail has a site where you can dream online. Go to their site Make up a headline that you would really like to see in the paper about MS. Then send to the editor. I have a couple up there. More have been refused but, trust me, if enough people do it, they will get the message. And if you see a good one about MS, let them know you like it.

Well I am off to sharpen my msdragon-killing sword.
Catch you later

1 comment:

  1. Good, don't forget the talk shows though they get more attention than you might think.