Ok were all upset and angry, so now what?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Ok were all upset and angry, so now what?

Postby nicko » Mon Dec 21, 2009 6:57 pm

Being a canadian i've seen it time and time again. People are very upset with something but just gradually let it go. Everyone complains and rants together, but then it seems to just die down and eventually no one talks about it. I'm scared this will happen with the CCSVI, I think we need to really pressure the governments and medical communities. Would protesting get any attention?? any ideas??
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Postby Johnson » Mon Dec 21, 2009 7:07 pm

My name is not really Johnson. MSed up since 1993
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Postby danegirl » Tue Dec 22, 2009 12:52 am

I do not think this will die down. It is not just some national matter, but it is a worldwide demand from MS'ers all over the world, that if (when) Zamboni's theory is proven true, we demand something done. All of us - all over the world. We will not go away.

Cheers from snowy Denmark! Merry Christmas and Happy New Year. May CCSVI come true for us all.
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Get Tested

Postby MarkW » Tue Dec 22, 2009 3:23 am

Hello Nicko,
Stage one is getting tested. This means finding and paying for a Radiologist who is willing to do an MRV and/or Doppler on you. MRV is more expensive but needs less expertise on pwMS, according to received info. Give the Rad the background papers and tell them about the study in Buffalo. Do not talk about this being a cure for MS. Doctors like being involved in new techniques as it is good for their resumes. Finding a good Radiologist will mean searching the larger hospitals in your area and dealing with the doctor directly. The hospital admin people will regard you as extra work only. It would help to team up with a few pwMS in your area so the doctor has a few people to learn on. Understand the risks of MRV (contrast medium used). Assuming something is found (the doctor will expect to find a blockage as his peers are reporting this) then go to stage two.
Focus of stage two is -I need this treated- as it could lead to serious non MS complications if left. Interventional radiologists do arterial angioplasty on a regular basis. You need venous angiplasty performed. Expect to sign disclaimers of responsibility for the doctor. Afterwards, have a check up to ensure the angioplasty worked.
I suggest trying to do this as a self funded patient as there are fewer barriers. Do not ask your Neuro for permission (would seek their permission if you have blocked arteries in your heart ?). Your general physican (GP/family doctor) will need to support you or you could need to find a new open minded one.
This will take you time, effort and money and you will probably meet a few road blocks on the way. Keep a diary of your MS symptoms so you can write about it in the future.
Best wishes
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Ok were all upset and angry, so now what?

Postby reg613 » Tue Dec 22, 2009 7:30 am

nicko wrote:Being a canadian i've seen it time and time again. People are very upset with something but just gradually let it go. Everyone complains and rants together, but then it seems to just die down and eventually no one talks about it. I'm scared this will happen with the CCSVI, I think we need to really pressure the governments and medical communities. Would protesting get any attention?? any ideas??


Nicko:

Ah, spoken like someone who knows. Yes, me too...

Thing is, UN- fortunately, we're not ALL good and angry (and yes, anger is good despite the propaganda that it isn't). Some people will never get angry. Their job is to play sideline umpire on those of us who do. It's just the way it is and it makes the fight a lot harder for us the pioneers.

As an example, I have a relative whose purpose in life is to wait for me to do or say something and then she levels it out with a generalization or cliché and takes the credit. If I hadn't been born she would have no ideas of her own. Ha ha. Anyway I digress.

You can bet the medical industry has factored this interplay into their business plan knowing that any MS sufferer who bucks the system will be ostracized by their peers and that's that seen to. People nowdays are groomed to see to things with their wallets first and are happy to be given the opportunity to get out of personal responsibility. Imagine being on a desert island with MS. You'd have to do some serious work to figure out how to manage it. Money would be useless.

That being said, only some of us will get angry and many, many fewer in Canada than anywhere else. Canadians are "nice."

You asked for ideas. My idea as of today is this.

From reading various things in the past few days I see that doctors and their ilk are more disturbed by their loss of image and esteem than money. A doctor is a certain type of person. He or she did NOT get into medicine to help people. They got into medicine for the image it presents to someone hungry for power over others. These people are typically vain, narcissistic or totally self-loathing for personal or other reasons and need to have a daily fix on demeaning others they choose to hurt.

They love the choosing part. This is why so many autonomous patients bite the dust. So stay away from these truly sick people just like watching out for who "loves working with children" in your local day care!

If someone passionately wants to take care of your brats or you, there is something wrong. You aren't lucky, your brats aren't wonderful, and this isn't a reward for some reason. Same with doctors.

With these scumballs lurking about, the next step is to boycott them and let the government know that this is your only choice. The government has the problem of providing a society so they always go with the people who are willing to do the jobs. They don't care what people's motivations are to work in particular places, just as long as they can set up something that lulls the damn public. The rest can be done with syrupy advertizing campaigns.

Man I wish we were back in the time of the Native Indian. They had everything figured out. I guess that's why they were destroyed.

Next, we need a website, or a place in this website for people who do not want any part of MS pharma. They are malicious.

About Poland.

The self-help breed of MS sufferer must organize with Dr Simka, bulk visits to Poland. Bypass and boycott everything in Canada and US etc.

Buffalo NY and Toronto Canada are the cockpits of all medical evil under the sun. The person responsible for tsyabri comes from the same department in Buffalo as the ones looking at CCSVI.

I would also seriously distrust Zamboni. He is working along with these snakes. Remember Zamboni did NOT invent or discover the jugular/iron problem. He was more likely the PR choice for its slow, time-released disclosure along with Avis Favro from ... Canada... and its human interest baloney to slip it along to the world. Wow, I'm so convinced...

Why do I trust Poland? Because it's all we have. So let's make it work.

I don't know how much the rest of the world knows about the tasering of the poor man who came to Vancouver to see his mother. He bravely and courageously endured much suffering after he landed at the airport, and then when he showed his frustration as a natural human would, he got tasered to death by some animal doing a job! (Chosen for the job, see... like doctors...!)

If Poland can produce a human being like Mr Dziekanski then I trust the place. If you are Canadian, I would apologize to Dr Simka for the persecution of his countryman.

In Canada, they torture, kill, exterminate anyone that looks brain damaged unless you have run-of-the-mill MS of course. MS serves as a cover for murdering for organs and the tasering of people who speak out. With all these walkathons etc it looks like Canada really cares about the brain damaged. Yeah right!

1. Boycott all fundraising
2. Stop cowering to the neurologist. He/she's the one with the problem not you.
3. Go to Poland in organized groups to lower the cost. Advertize your successes and be open with any failures so as to make the procedure work better. Call your treks there, the "Dziekanski Pilgrimage." This man was tasered on the grounds that he was mentally disturbed or brain damaged so who better for a patron saint or guardian angel.

4. Send the bill to the government or insurance company to be reimbursed later when they get their act together. CCSVI isn't going away. They have intentionally unleashed it but they have to launder it as Zamboni's love story so people won't get mad and say why didn't you do this 50 years ago?

5. Remember that the word "Zamboni" is the name of a machine that makes ice really slippery. And all this is a big long slippery slope.

This is too funny. The dead are really angry.
reg613
 

Postby Brainteaser » Tue Dec 22, 2009 3:07 pm

Well said, MarkW.
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What to do.

Postby JSTCD » Thu Dec 24, 2009 12:21 am

This is what I did, and want to do:

I heard about this, and wanted to confirm it, I searched the internet, there was no second study to confirm deny. But it did seam like a sensible theory to me. I had casually noticed my wife's head turns very red when she exercises (the one with MS). Suddenly this made some sense.

I did a poll on this site to see if this was a coincidence or if others had similar experiences. Others did.

As a result we are believers, but my wife's particular form of MS is very mild, so we have decided to wait until the world comes around and offers the treatment. But I'd still like to see the med comunity/gov move faster. (Don't get me started on how un-ethical I consider medical ethics to be)

My plan (before my wife talked me out of it in favour of the wait and don't make waves plan, (Can you tell we are Canadian)):

The poll I did was prety unscientific and frought with problems, but if MSers get red head more often than non MSers, one should be able to get photos of this. I image taking out a full page add in the globe and mail, there'd be MSers with red head and nonMSers without, and a tag line something to the effect of: "A new theory suggest blood return from the head may cause MS. Can you find the people with MS. If you can, why can't their doctors?" And then a more detailed fine print copy at the bottom.

I think there would be a lot of movement, in a real hurry if this could be shown to be visible, not just theoretical.
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Re: What to do.

Postby Johnson » Thu Dec 24, 2009 1:56 am

JSTCD wrote:This is what I did, and want to do:

The poll I did was prety unscientific and frought with problems, but if MSers get red head more often than non MSers, one should be able to get photos of this. I image taking out a full page add in the globe and mail, there'd be MSers with red head and nonMSers without, and a tag line something to the effect of: "A new theory suggest blood return from the head may cause MS. Can you find the people with MS. If you can, why can't their doctors?" And then a more detailed fine print copy at the bottom.

I think there would be a lot of movement, in a real hurry if this could be shown to be visible, not just theoretical.


I think that is a great idea. Some would point out that it is as unscientific as your poll may have been, but it is a great visual, and that's what counts in advertising.

I don't even have to exert myself...

I'm going to fire up Photoshop, and rough up some copy.
My name is not really Johnson. MSed up since 1993
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Cause or correlation ???

Postby MarkW » Thu Dec 24, 2009 5:00 am

Stating that CCSVI causes MS really hinders our campaign as there is NO proof. It is correct to say that MS and CCSVI have a correlation, which is being tested in a large Buffalo NY study.

Happy Christmas,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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CCSVI

Postby MSchick » Fri Jan 01, 2010 1:55 pm

Really, why can't it be this simple! I'm sure the large drug companies will not be happy that it is not a pharmaceutical fix, but, hey they're making enough money on our ill health.

I am Canadian and as with anything YOU must be your own advocate in treatment. With that, I immediately got an appt. with my Dr./GP to make the referral for a Doppler ultrasound. Although my GP was accommodating with the referral, she did emphathize NOT to get my hopes up. All OK, but an ultrasound is a non invasive test. As well, I am part of a clinical drug trial and such have had a number of recent MRI's with the contrast dye, but what I need is someone to read them. That was my next step - to which I've learned a neuro-radiographer is who you want to get to. So, after finding one of the leading one's in Southwest Ontario, i have an appt. for the ultrasound and a connsultation meeting immediately after - January 29th!!!! I am being cautiously optimistic about the possibilities but if indeed I have CCSVI, the neuro-radiographer is who performs the angioplasty procedures! Even with upcoming trials, the grants from the MS Society of Canada is not aannounceed until June 14th. It would be approx. 1-2 months after that before they would be recruiting candidates so I figure I'll know at a minimum of 7-8 months before trials would be up and running, let alone if they were in my area! All these tests and procedures are covered by our provincial/federal health care system. So, push for the ultrasound! Good luck and I'll keep you posted.
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Postby Apuman » Fri Jan 01, 2010 3:50 pm

Dr. Zambonie has proven a link between CCVIS and MS. He hasn't proved causality, but simply by showing that vitualy all MSers have blocked veins, he has made a breakthrough far to big to ignored and swept under the rug. Already, MS societys are backing off from their initial skepticism. I have no doubt that pressure from MSers played the largest roll in their attitude change. Naturaly, the studys won't give us results overnight, so we will be required to be patient, but that's not to say we should stop pushing. To our patience, we must add pesistance. We must follow our better judgement without letting it become overwhelmed by our emotions.

Many of us are angry at the medical industry, myself included, and with plenty good cause. However, there are those who would serve to manipulate us in our anger for their own purposes (not naming names, but there's a perfect example on this thread.)

Put another way, when is it best to address your differences with your husband/wife/bf/gf? When you're both yelling and screaming at each other, or when you've calmed down and can rationally talk it out? On the other hand, it's also not good to just let it all "blow over" and act as if the problem is not a problem without resolving any of the differences. We all have a relationship with this thing called MS, unfortunetly, so we must treat it the same way.

If you're angry, be angry! It's perfectly natural! Find a healthy way to vent that anger, but don't let it overwhelm you to where you would be making irrational decisions that could end up hurting yourself or others who don't deserve it!
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Postby JSTCD » Mon Mar 08, 2010 8:26 am

Stating that CCSVI causes MS really hinders our campaign as there is NO proof. It is correct to say that MS and CCSVI have a correlation, which is being tested in a large Buffalo NY study.


I dissagree.
If you walk in to an emergency room with a knife in your arm no-one is going to do a double blind study to check for causality to see if said scenario is contributing to your arm pain.

At some point, and with some things, the burden of proof shifts.

IF CCSVI exists at all, and IF it really isn't a normal pattern seen in the general population, Ie if it correlates with MS, then I think it is almost unfair to suggest a blood flow problem from the brain and coincidental brain damage arn't related. I think you would have to prove it is NOT.

That said, CCSVI is so new that to say the correlation exists at all is still uncertain. Personally I "beleive" it to be the case, but I won't be "Sure" untill I see a few more studies.

But since a brain is a terrible thing to throw away, My wife and I am going to proceed along the path I "believe" is the best one NOW, rather than wait five years and have what's left treated at that time.

For us that mean's convincing doctors to let us do the tests, and given that it should be "our" choice, it is frustrating to find that apparently it isn't.
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Postby cheerleader » Mon Mar 08, 2010 11:07 am

Anger's no good for MS/CCSVI...raises cortisol, creates more endothelial disruption. Tighter stenosis, more reflux.

Join internet groups in your location, bring the research to your GP, find interventional radiologists or vascular surgeons at your local universities, make other lifestyle adjustments for vein happy health until you can get tested and treated.

Lots of info about all of this on the Facebook page I started. Read thru the notes section. About 15 pages now. yikes!

Today's Facebook poll shows CCSVI being diagnosed around the world.
Come on over, visit, post. Click on the blue letters under my sig. And take a deep, relaxed diaphragmatic breath. In......o-u-t-ttttt. Ah. Much better.
HTH,
Cheer

BTW, I've met, spoken with, and continue to correspond with Drs. Zamboni, Simka, Zivadinov, Dake, Haacke, Schelling...and making broad generalizations about who is or isn't for real is just plain crazy. These are genuine gentlemen, committed doctors,- who really want to get to the bottom of the venous association with MS. And making spurious comments about their motives does not do anyone any good. (breathe, reg...I'm very surprised you came back...)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Brightspot » Mon Mar 08, 2010 3:54 pm

Thanks for your post.
Please see my recent post calling for Canadians to send messages to a politicians. I attached the links.
My next step will be to prepare some individual letters for friends who are not comfortable creating letters. I will print the letters and get them signed, then deliver them by hand to my MLA. It will be the second meeting with my MLA. I believe we can get some action on this!
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