Neither American nor Canadian governments are leading the way. But you can! Will you?

November 21, 2010

Even the unlucky among us can find someone who is a lot more unlucky than we are.  I did not have to go further than my favourite other blog to find lots of  'someones'.

Lori is a member of an MS Community group where I hang out a lot. She is in need of some relief from her MS - she is in a lot more need than some of us. Below is Lori's plight as told by her son. Give it some thought, folks. Then, if you can spare even a few dollars, please go to this site and drop it off.

 http://funds.gofundme.com/15434&fb=1

a letter my son sent to local newsman--I am sitting here crying thinking about the letter my son sent to a local news agency

 

I am sitting here crying thinking about the letter my son sent to a local news agency in an attempt to help me. I love him so much.

Well, a few years ago my mother was diagnosed with Multiple Sclerosis after she went to the doctor for what she thought was nothing, the tip
of her finger going numb. It's been like.. five years and since then she
has gradually gotten worse and worse with each year. Today it takes all
her strength to get up in the morning and get my little brother up for
school. She makes like, one dollar too much to qualify for disability,
and she's planning on trying to make it until the first of the year to
quit her job, leaving her with the uncertainty of if disability will be
enough to support us. It's her, my twelve year old brother and I. We
live in a single-wide trailer in the community she manages, Ontario
Place, on Ontario Road here in Niles.

She's been on so many different medications to try and slow the spread of MS. She is on baclofen for her neuropathy and circulatory
problems, methylphenate for the narcoleptic bouts, lortabs for the pain
and they don't even touch it anymore, and takes at least ten different
vitamins every day. She took a shot every other night of this stuff
called Rebif, an interferon injection that supposedly slowed the MS from
attacking her immune system. She took it for the last three years until
her body began to reject the shots and knots formed all over her body
until she ran out of injection points. She tries to be strong but at
least two or three times a week she breaks down from it all and I have
to console her like she used to do for me.

I have taken upon myself all the "motherly" tasks. Every day I wake up and make coffee for her, I mop, I scrub, I cook, I clean, I do all
the laundry, I vacuum, I help my brother study, I make sure that she's
doing as decently as she can and do everything I possibly can for her.
We barely scrape by. I'm a college student at Southwestern Michigan
College, and I'm pursuing my BA in Information Technology/Help Desk. I
don't know how we stay alive but we do, mostly because I get my strength
from watching my mother fight these battles every day. I and my brother
have healthcare through my dad and his new wife, but my mom has no
healthcare insurance and doesn't qualify for any of it or can't afford
any of the options out there.

Every day she sits up at her computer, on Facebook, playing Farmville. My friends poke fun at Farmville players but I see it as my
mom's only escape from the prison that is her body. When she isn't
playing Farmville she's researching MS therapies and treatments, and
that's why I have come to you. There is a treatment that has been
popping up all over the world called CCSVI. To my understanding from her
and how she has a hard time speaking the thoughts in her head, it's the
theory that the difficulties brought on by MS are due to a lack of
blood flow to the brain, and the treatment is essentially opening up the
main artery to the brain and putting a stent in it to increase the
blood flow. She has spoken with hundreds of people that have had it or
know someone who has had it, and while the process doesn't always
alleviate the symptoms, most of the time it does.

So she has been asking them how they find the money. A majority of them are Canadian and the Canadian government has banned the procedure
until more research can be done. Every day people with MS are marching
up to parliament about it until they revoke it, meanwhile going to the
US or Mexico or even as far off to India to pay out of pocket for the
procedure. Fundraisers have been suggested, and we've all seen the gas
station "Save my daughter who has been diagnosed with leukemia" change
jars with 43 cents in them. But one story stood out. A woman went to her
local news stations and told them her story, and one of them picked it
up as a public relations/human interest story.

All I can really ask you is what she asked me to type up and send to you. This is our story, and if you could pass it along to someone at
WSBT who might take interest in it, we would like to ask if WSBT could
fund this procedure, in return we will give you the right to tell our
story, come into our home and see who we are, the battle she fights
every day. Film the procedure and her progress, let the world know about
this new treatment that millions of suffering people around the world
are coming together to call MS Liberation. I know it's a lot to ask, but
I figure I could either give it a shot or just sit here and watch her
suffer

http://funds.gofundme.com/15434&fb=1

If you want to read more about the situation MS patients are suffering through, the welcome mat is out at 

http://ccsvi-ms.ning.com/ 

What a Difference 90 Years Makes

November 15, 2010

You may have noticed a lot of stories on the TV this week about Banting and Best and their wonderful discovery - Insulin - the saviour to countless diabetics who would otherwise die decades before their time. I am very sure most, if not all,  Canadians know a bit about this great Canadian discovery made in 1921/22. Did you know that there were NO scientific trials - it went from being tested on stray dogs to being injected into human diabetics as soon as it was it was made. There was no keeping dying diabetics waiting for years from the treatment that could save them. There was no psychobabble about placebo effects. There was no TV so it took perhaps a week or two for all the papers to do it justice as a topic and as soon as diabetics and/or their families heard about it, they lined up to get it. And as fast as it could be produced it was given. Today, almost 90 years later, it is still the number one treatment for diabetics. And that is all it is - a treatment.  It is not a cure. Canada still basks in the glow of that Canadian discovery and is still looking for a cure.

But we are not as understanding to MS sufferers as our parents and grandparents were to diabetics back in 1921. In fact we are not, as a country, even remotely sympathetic to the 76,000 give or take MS Sufferers. Most people do not even have a clue what some of the more widespread and most debilitating symptoms are. Relatives know;  friends sometimes do. And part of that ignorance is our own fault - we MSers tend to keep our misery to ourselves. My next door neighbour who has known me for 6 years thinks I walk with a walker because I have arthritis. I stopped going to doctors about some of my symptoms because they immediately put me on anti psychotic drugs. I mean, when you cannot explain intermittent blindness, it must be a psychosis, right?  Blame that one on the Medical schools who put  emphasis on psychotic behaviour when they can't explain something. It's the fashionable way to diagnose it seems. So public understanding and medical empathy is hard to find.

But in all this turmoil, along comes a doctor - this time an Italian, Dr. Zamboni, who discovers that clogged veins, if opened with angioplasty, make people with MS somewhat better. There are hundreds of people who have had the treatment and are visible, living  proof that angioplasty works to some degree or other for most who's tests prove clogged veins. Angioplasty is not some never before tried procedure - it has been around since the late 1970s. There were no trials for it apparently either.In fact, it is really hard to find a procedure that was given years of trials before it was used. Many of what we consider standard procedures were proven on the spot - that spot often was a makeshift war hospital. Is there a more demanding trial than that? MS is a war! If this were 1921 this would have been fast tracked and by now there would be testing sites at least in all the major cities and people would be getting relief of some, if not all, of their symptoms.

1921 was of course long before television and mass marketing as we know it to be today. 1921 was also long before the drug companies became THE ruling Party behind the ruling Party regardless of which Party was in power. 1921 was a time when doctors truly believed theirs was an honourable calling and that calling was to give aid and comfort to the sick. Some of us are lucky enough to stumble upon a doctor that still puts morals and ethics and patient care above the almighty dollar but they are getting fewer and farther in between.

Now we have doctors who demand  multi million dollar research grants for research that is questionable. It usually involves the use of drugs manufactured by companies who do not make their financial records available to public scrutiny. Those drug companies charge exorbitant fees for drugs that often do more harm than good or do nothing at all. We have researchers with tunnel vision who call anyone else's research a hoax when it does not line up with theirs. Are The MS Society, the various levels of government and the drug companies all part of a smoke and mirrors carnival trick?  Do they all hear voices that tell them not to do this procedure? As I think about the WHY of this situation I can't help but think that nowhere in this entire drama is there any care about my well being nor about the well being of the 76,000 other MS sufferers in Canada.

In 1921 there was no talk about running trials where a group of diabetics would be split in two and half given insulin while the other half would be given sterile water (or something equally as inert) just to see if they exhibited a placebo effect. Try to imagine, if you will, the mental and physical torment of those given the sterile water. It's inhumane! It's insane!  But it is ok to do this with  people with MS. At least that is what some neurosurgeons, politicians and MS Society executives want you to believe.  Let me tell you. If it is insane to think of doing that to diabetics, it is just as insane to do it to those of us with MS. If it would have been inhumane to do this to diabetics in 1921 it is equally as inhumane to want to do this to MS sufferers in 2010. More so even.

As I sit here watching a TV short about Drs. Banting and Best and their wonderful discovery, I think it is good that they have passed away and are not here to witness the cruel and foolish behaviour of those who have followed them and who are turning their much esteemed calling - medical research -  into such a monumental national scandal and embarrassment.




Read more about Banting and Best's Discovery

Clear, Concise Information from the MS Society of Canada??????????????

November 14, 2010

Did you ever wonder what happens to the money that you donate to the MS Society? Well, one of the things they do is offer a web site - http://mssociety.ca/en/default.htm.  I surf on over there periodically in the hopes of getting enlightened. The other day I was looking to see what causes MS. This site, I believe, is supposedly written for a layman. Actually, a lot of it is a good example of how to say nothing and say it  impressively. And how to take a wild guess, surround the guess part (usually contains the word may or could) with big, often technical or scientific words and phrases and leave the reader thinking he has read a really definitive statement. Take a look:-

What causes MS?

According to the MS Society:

While the exact cause of MS is not known, current research increasingly points to a complex interplay of environmental and possibly genetic risk factors. Together these two factors may influence a risk for developing MS given a prescribed set of conditions which are yet to be discovered. MS is NOT contagious, and is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.

Are you confused? Do you remember how to précis from your days of taking high school English Composition? Let me précis this for you,

What causes MS? The Precis

Don’t know. It’s not contagious and it looks like it could be caused by environmental factors and it’s not inherited unless it is genetic. (Huhhh!!) That is what the MS Society will research.

Perhaps the MS Society should have quit while they were ahead with the one statement that is basically true - the exact cause of MS is not known. And this one is a pretty safe bet too - MS is NOT contagious. Ok so
now you can kiss me, have sex with me and or sneeze all over me and I won’t catch your MS. The rest of this paragraph –

“ and (MS) is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.”

 Means exactly what?? Tells me absolutely nothing about the cause which is, if I read the headline correctly, what this is supposed to be addressing. It is a lot of double talk and drivel. Perhaps if we read it out loud in a calm, soothing voice, it will hypnotize us. LOL

I can’t speak for other families but here is how MS affects my family. There is no MS on my Mothers side of the family. On my Father’s side, one of his 7 siblings had it and it only reared it’s ugly head as far as anyone knows in his later years. The rest of them and their numerous children are MS free except me. Sorry but genetics (as in inherited) does not just leap off the page at me. A very quick, unofficial poll of my neighbours tells me that the average person sees the word "genetic" and thinks inherited'  first and foremost and often, only.

Environmental factors – maybe I’ll buy that. There is so much crud in the food we eat, the water we drink and the air we breathe, it will probably turn out to be the cause of a lot of problems. Perhaps that crud messed up some element of my DNA or maybe it messed up something altogether unrelated. Maybe
that DDT they used to spray all over hell’s half acre affected the way my veins and arteries developed or maybe they developed just fine but it messed up the way they work. Maybe that is just a side issue and it is really that I do not produce enough or maybe I produce too much of some hormone. But I am not a
scientist. So what do I know?? Judging by the MS Society’s statement, I know as much as they do. And I can make as many good guesses with my grade 12, and college certificate education as they do with their years of medical school and neurology and all those other ‘ologies’ they have. Their statement is a really
vague one so back to the drawing board with the causes and the statement.

I suppose one could be very lucky. Pick a disease or condition. Put the possible causes on a board and throw a dart and hit the right guess and indeed find a cure. But the odds of winning the lottery are probably better. Kind of looks like the MS Society did just that though and then developed tunnel vision about
their pick.

Perhaps the better route at this point in time is to look at some of the symptoms. Find an answer to them. Like Dr. Zamboni has done. I have been reading, like so many other MSers, the success stories, partial success
stories and the “It was a dud’ stories coming out of the rush to get the
Liberation Treatment. I have watched the video of one young man who spent years unable to walk, climbing stairs – months after the treatment. The MS Society would have you believe that this is just a Placebo effect – wanting to be better so badly you fool yourself into being better. Hmmm!!! Sounds like hypochondria more than a placebo effect. Of course, if it is hypochondria, there are 76,000 Canadian people give
or take and God only knows how many there are in the other affected countries, who are doing a fabulous job of pretending to have MS. Or maybe it means that there are doctors who have misdiagnosed 76,000 hypochondriacs with MS, Oh Yeah! I forgot, the lesions. Well maybe we are so clever we can think ‘lesions’ so hard that they will magically show up on an MRI. Here’s a novel thought – This guy in the video really does have MS; the liberation treatment really did help. One of the symptoms is CCSVI. When the
symptom was treated it went away.

Perhaps those who only had partial results or no results, have other undetected veins that are still blocked or maybe for them a different symptom is dominant or maybe the doctors and technicians doing it just need more experience or better training. Maybe they were misdiagnosed. Maybe MS is not the kind of condition that will ever have a ‘One Size Fits All’ solution.

Maybe the research the MS Society of Canada has been working on is, in fact, useful. Maybe it will become more obvious where and when it is useful if the CCSVI part of the condition is not there to worry about. Maybe the members of the Society who are reacting rather than acting on Dr. Zamboni’s findings, can still be the heros they would like to be.

Or maybe they don’t give a continental damn and just want the flow of cash from drug companies to keep coming so they can support a lifestyle very few MSers will ever be able to have even if they can afford it. My gut tells me it is a money thing. My heart wants to believe that, as Canadians, they are somehow above that
kind of sleazy behaviour.

Ok This started out as a critique of one paragraph from the Canadian MS Society Page. It has made me appreciate Miss Stanton, one of my High School English teachers and Don Stewart, another of my English teachers. They would rip up one side of me and down the other if I had ever written such a vague, say nothing statement and palmed it off as information.

An Interview with Dr. Hubbard

October 29, 2001

I urge everyone to take a look at this video -
http://www.komonews.com/home/video/106175483.html

What a fabulous video! A doctor who uses logic as well as his training and knowledge And speaks to us in English instead of Medicalese. Dr. Freedman - Resign or get on board. 76,000 Canadians need help not hindrance! And that number only refers to those who have been diagnosed with MS, not those who are wandering around out there in one of Dante's rings of fire like I was for 25 plus years. Mind you a diagnosis of MS is just a move from one Ring of Fire to another until someone does something to alleviate these symptoms.

It is embarrassing that our Dr. Freedman is one of the three naysayers.
 

How long have you had MS?

October 14, 2010

Do you remember when you first found out you had MS? Do you know how long you have had it? It is unlikely you really know. Most doctors treat the symptoms long before they even think of MS. After all, if you have a problem with your eyes, for example, they treat your eyes. If the symptoms go away on their own, chances are you will both forget it. You may go through that process several times before anyone starts to wonder about the problem being bigger than the symptom. Here is how it played out for me.

Doctors had been talking about maybe it was MS for a few years but no one actually made a diagnosis or at least never told me they had. I was unable to work at anything - the market was depressed and my age worked against me. I'm an accountant and a paralegal and without any feeling in my right hand, holding a pen for more than a couple of minutes, or typing is pretty impossible especially when there were time requirements. So I have been on O.D.S.P. since my savings ran out a few years ago.


But for the years between a cancer operation in 1990 and O.D.S.P. my savings and the odd job kept me going. And my sister in South Africa put a roof over my head for about three years. It was while I was at her place that I knew I had MS.


I loved to walk and I loved walking around Polokwane checking out the flowering trees and the beautiful birds and the odd wild animal. Christmas is a real fun time for a Canadian to be in South Africa. It is hot with temperatures going up into the mid thirties Celsius and it is very dry. I would go to the mall and have the grandest chuckle at the cotton wool snow and those poor native's dressed as Santa complete with padding to make them seem fat and jolly. Everyone would sing "Jingle Bells" and I always wondered if they had any idea what a 'one horsed open sleigh' was. There certainly were none anywhere to be found in South Africa or anywhere else in Africa for that matter.


I was headed home from one of these jaunts when my left foot broke the rhythm by flying off to my left and at a weird angle, nearing sending me flying. In initially I told myself I must have stepped on something but it did it again with my next step and the one after that and the one after that. But I knew I had seen that gait before. A gal I used to know who had MS started out like that. Hers got quickly much worse and she eventually could not control her limbs or her speech at all. My little episode went away after a couple of days but I knew. A few months later I was back in Canada.


I mentioned my fears to the doctors here and they just fluffed it off and gave me anti-depressants. They also got really ticked off at me for ‘self diagnosing’. I do not understand their anger. I have lived in this body for 65 years and am very tuned in to it’s little foibles; they looked at a few isolated portions of it for less than 20 minutes and claimed to know more about it than I did. And they did that for the next 6 years.


During those 6 years I went from walking to walking with a cane and then to depending on a walker. I also went from being able to do short term jobs to not being able to anything in an office. If you never thought about it before, just think of how many of the usual office procedures depend on your hands and fingers being in working order.


My right hand had been pretty well useless at doing things above waist level since that breast cancer operation in 1990. Well I thought it was useless but it got more useless. Back then I couldn't move my arm above my waist but I could feel things. Now I was experiencing moments, sometimes days of being unable to feel anything. Glasses and mugs slipped out of my hand to the floor if my concentration wandered; buttons were impossible to do up. My writing went from pretty good to unreadable. My doctor's response - give me yet a stronger anti-depressant. So I moved from small town Ontario to small city Ontario. And I got a new doctor. My Dr. Yau is a gem, a diamond that would make Cecil Rhodes' discoveries fade in comparison. Sadly for me, she isn’t an MS specialist. She’s my G.P.


The first noticeable difference - she listened to me. Then she didn't fill me up with "head" pills. Then she sent me to a fabulous little place here in Ottawa - The Elizabeth Bruyere Day Hospital. There they taught me some excellent exercises to keep from atrophying totally. They showed me some household devices that would help make some things easier - a great little gadget to make getting out of the bath easier; a scooter to make trips to the grocery store and back possible etc. And sometime during the three months I was going there, my bladder up and quit. So they taught me how to catheterize myself.

I'm not sure but I think it was the bladder thing that really got the ball rolling. My next trip was out to see the MS people at the Civic Hospital. The doctor I saw there fired questions at me. Questions about fainting, tripping, numbness and etc etc etc. Lots of the areas he touched on were familiar – sort of. I had had little problems with most of the areas he mentioned but none had been bad enough and none lasted long enough to send me to a doctor. Well except two.

Question: "Have you ever suffered temporary blindness?"

Answer: No but I did have a strange thing happen back in 1988. I suddenly had black spots in the middle of whatever I looked at and that turned to double vision. I had at least a half a dozen tests but they could not find the cause. That lasted about three months and then just up and disappeared. It has never happened since so I just wrote it off as some sort of quirk." And

Question: Ever had any strange incidents that we haven’t mentioned yet?

Answer: Yes. Once my back just gave out on me without warning and for no apparent reason. I could not hold myself erect no matter how hard I tried. I went to a doctor who gave me lots of tests but never had an answer. He recommended physiotherapy. It didn’t make any difference so I took it upon myself and strapped my back. I.e. I taped it tightly so that I could walk upright.

Those two questions plus all the others plus the MRI results plus the failing bladder and finally I have a diagnosis.

And, CTV’s W-5 showed me The Liberation Treatment. A possible Cure? Treatment? Hope? And that possible cure/treatment/hope is called CCSVI (Chronic cerebro-spinal venous insufficiency)

And now here I am, finally with a diagnosis and running into more medically inspired smoke and mirror jobs. Like we need placebo trials for CCSVI. See Placebo Effect on the page entitled, What Are MS Dragons for a brief monologue about it. Please feel free to turn it into a dialogue by adding your 2 cents in the comment area. So, have you figured out how long you have really had MS??

Are You a Part of the Solution?

As you may be aware, there has recently been a hopeful, possible breakthrough for those of us with M.S. It is called CCSVI. There is a lot of info on the Internet about it. Just type CCSVI into your search engine or you can go to http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency . It's good for general info but if you are looking for something more technical and scientific, do the search. (Targetting one over another could be misconstrued, hence the generic wiki.)

But I digress!  CCSVI is what a great many MS sufferers are looking at to give them relief, hopefully complete relief but I know that I for one, would be happy with any relief. In spite of some of the head butting we are doing with some of the medical 'experts' and politicians, there are some places who appear willing to  move forward.


St. Joseph's Healthcare Hamilton, in collaboration with McMaster University, is doing research on the correlation between CCSVI and M.S. And they need some volunteers. Below is a copy of an email I received earlier today. As I have MS, I do not fall within the required parameters. Here's the email:

As you know, St. Joseph's Healthcare Hamilton, in collaboration with McMaster University, is doing research on the correlation between CCSVI and M.S. 

They need healthy volunteers, between the ages of 18 and 65 to have an MRI and Doppler Ultrasound. It will take approximately 4 hours of your time.  Parking and travel with be reimbursed up to $50.00.

Healthy volunteers must not have M.S. or be genetically related to anyone with M.S. However, they can be a spouse of someone with M.S. At the present time, females are preferred since the incidence of M.S. is greater in women than men, but men are still needed.

If you are interested in helping advance the science and understanding of CCSVI and M.S. please send an e-mail to:

Andrea Mazzetti
Research Assistant
M.S. CCSVI Study
Email - amazzett@stjoes.ca

 Now you may be generally  healthy but the MRI cannot be done if you have certain metals in your body. People with metal implants  may not be able to have a MRI performed. The reason is that the MRI is done using a very strong magnetic field to create the images. Some metal implants could cause problems if subjected to these incredibly high magnetic forces. I have no first hand knowledge about implants but I do know it can turn a hairpin into a lethal weapon. Fortunately, there was no one between me and the machine when it was ripped from my hair and sped faster than a bullet into the magnetic field. So Be sure to check with your doctor to ensure that your implant is safe for MRIs. 

I am not claustrophobic but if you are, perhaps this is one volunteer job you should by-pass too. I

So, in short, for this Volunteer job

1. You will not have MS yourself.

2. You will not be genetically related to someone with MS.

3  You will not have any metal implants.

4. You will not be morbidly claustrophobic.

5. You will live in Hamilton, ON or nearby.

Again, the person you want to get it touch with to volunteer is

Andrea Mazzetti
Research Assistant
M.S. CCSVI Study
Email - amazzett@stjoes.ca

 

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. http://www.ctv.ca/CTVNews/Health/20100929/cancer-drugs-100929/

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. http://www.ctv.ca/CTVNews/WFive/20100409/w5_liberation_update_100409/

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  http://www.ourtimetolead.ca/ 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