When treatment becomes mainstream, who gets priority??

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

First Step - Get Tested

Postby MarkW » Wed Dec 30, 2009 3:39 am

I am frustrated with this site. There is no focus on the first step - finding a centre/person who can perform an MRV and/or Doppler. In the UK the health insurance (NHS) will NOT pay for speculative testing so if you want a test find the money to pay for it. This is probably true for most health insurance schemes.
Getting treated is not an issue if you are paying for the procedure. (Good looking people have plastic surgery for instance. You could use the compasionate treatment argument as well).
Focus on creating groups (see recent posts) to get the test done if you have the money. This will start the snowball to roll and gain size.
The alternative is to gripe/moan etc. Life is unfair, we have MS after all.

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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Postby Mechanicallyinclined » Wed Dec 30, 2009 10:15 am

I feel pretty good this morning. I spent all day yesterday compiling some information to send the University of Manitoba who do research in conjunction with the St Boniface Research Foundation out of Winnipeg Manitoba. This was the response I got from one of the researchers there.

Thank you for your letter and your information concerning the latest advances in the field of MS and cardiovascular disease. We are aware of the progress made recently and are watching the field with keen interest. At present, we have no projects in this specific area but there are researchers here at St Boniface Hospital who focus on the molecular basis of MS. We also have a large group investigating the molecular basis of cardiovascular disease. They may be interested in collaborative work on this topic. I shall forward your message on to them.

Many thanks for your interest in research at St Boniface Hospital Research Centre. May you have a safe, healthy and prosperous New Year!

My point in sending this was just to show others that there is definitly people watching what is going on. Another researcher from the same foundation replied was that this wasn't his area of expertise, but he would forward my information on to anyone within his foundation that would find this of interest. (This Doctor is the head of research there.) There are people taking notice and I'm just happy I didn't get a negative response. I just sent my email to them last night and I was pleased to see the reply first thing this morning. I'm don't know if this will amount to anything, but at least the message isn't falling on deaf ears. I'm waiting for a response from another doctor as well.
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Postby dizzyintx » Thu Dec 31, 2009 12:21 am

There will be plenty of people jumping on the MS bandwagon and plenty of drs willing to take our money, so never fear.

I have had MS long enough to remember when Betaseron first came out. Way before there was any Internet. MS patients were foaming at the mouth to get on it. There was a lottery, I didn't get on it the first round, but the second round. People were screaming and crying, thought it was the end of the world. Everyone lived and in a few months everyone that wanted on it was on it.

I subspect this will be the same. JMO....
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First Step - Get Tested

Postby MarkW » Thu Dec 31, 2009 5:58 am

Mechanicallyinclined has demonstrated my point - warm words from from a research body but no actual MRV/Dopper testing. Doctors, like most humans, are herd animals, they follow not lead...............
To make progress we need people with the necessary funds to get tested and treated. The people who were treated by Dr Drake had the funds to do so, same for people going to Poland. To make progress we need people with funds to demand and pay for testing and treatment in as many locations around the world as possible.
Starting trials is good for people who want to wait for 2-3 years.

New drugs like interferons, tysabri etc get millions of marketing dollars spent on them so are quick to gain market acceptance. Is anyone spending millions on CCSVI ?

Trust me I am an Industrial Pharmacist and know how the system works.

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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Postby Mechanicallyinclined » Thu Dec 31, 2009 10:07 am

I see your point Mark. I agree with what you are saying. What I know though from a Canadian perspective is that we won't see treatments done
on a wider scale untill some trials on a bigger scale get done.
We definitly need people to get scans and treatments done if they can afford it. That will definitly jump start the whole movement. I'm just trying to get researchers and / or doctors aware of what's going on with this. It's supprising how many people in the medical field don't have a clue what's going on. You have to knock on doors and spread the word and eventually hopefully you'll find a person that is willing to take on this research. There's a a ton of radiologists that need to be brought up to speed on proper scanning tecniques. Also the medical community had to buy into this.
So I don't dissagree with what you're saying, but we need to do as much as we can individually to spread the word. If people don't have a vested interest in this, they aren't on these websights and don't have a clue how many people are going abroad to get procedures.
We need those that can afford treatment for sure. We need publicity on that. We need to jump start the whole research community so they actually realize what's happening and they don't even know it. Some do - some don't. Cheerleader didn't accomplish what she did by knocking on only one door.
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Re: First Step - Get Tested

Postby cheerleader » Thu Dec 31, 2009 1:12 pm

MarkW wrote:Mechanicallyinclined has demonstrated my point - warm words from from a research body but no actual MRV/Dopper testing. Doctors, like most humans, are herd animals, they follow not lead...............
To make progress we need people with the necessary funds to get tested and treated. The people who were treated by Dr Drake had the funds to do so, same for people going to Poland. To make progress we need people with funds to demand and pay for testing and treatment in as many locations around the world as possible.
Starting trials is good for people who want to wait for 2-3 years.

New drugs like interferons, tysabri etc get millions of marketing dollars spent on them so are quick to gain market acceptance. Is anyone spending millions on CCSVI ?

Trust me I am an Industrial Pharmacist and know how the system works.

MarkW


Mark...I must take exception to one of your comments regarding funds. I know you are frustrated with the lack of a game plan on this site. But we are just patients and caregivers trying to help one another.

I brought the research to Dr. Cooke and Dr. Dake at Stanford last January. My husband was covered for his testing and treatment by his insurance, since he had dual jugular stenosis greater that 50% (95% l, and 80%r) Sadly, Dr. Dake is not able to treat jugular venous stenosis anymore (his area of expertise as an interventional radiologist), but he will be part of a clinical trial initiated by the neurology department later in 2010.

I continue to restate....take this research to vascular doctors, interventional radiologists and your local universities. A few individuals and groups have done this in the east coast of the US, Canada and in Europe. Some have chosen to keep it off the internet, to avoid other meddling docs. It works, but it takes a lot of time and energy, and you're right, lots of door-knocking.

It isn't always about "funds" -
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Mechanicallyinclined » Thu Dec 31, 2009 3:29 pm

Cheerleader

AM I correct in saying that I should only be trying to get the people you mention interested in starting some research in this ASAP. Yes maybe I might be able to find someone to do the testing on me, but it's going to be tough to get anyone in Canada to do the treatment untill some reaserch gets done. I don't think I can expect any more than that at this point. Am I correct?

Happy Hew Year!
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When treatment becomes mainstream, who gets priority??

Postby petebou » Fri Jan 01, 2010 1:27 pm

Hi Mecha. I live in Canada too and the best advice I might give you is to follow Cheerleader's advice : send emails to or knock on doors of vascular surgeons and interventional radiologists working in University hospitals with the two Zamboni papers (Dec. '08 and Dec. '09) and ask for help. Don't forget CCSVI is a vascular condition FIRST and THEN becomes a neurological one. Cheerleader knows the way, she opened it up for us and it is working for me too. One thing though as with scientific research : patience and perseverance.

Good luck and Happy 2010!
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Postby Mechanicallyinclined » Fri Jan 01, 2010 1:48 pm

thanks petebou. It's taking a while to soak things through my thick skull but I have a better grasp on what to do now. I was looking at this differently before , but now I know that I should pursue this to help myself which will inturn help others. I'm no doctor, but I've learned quite a bit in the last while. I saw cheerleaders messages a couple of times and just wasn't soaking her suggestions in properly. I'm learning!
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