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

Please register as we prepare to launch a class action suit.

Postby markus77 » Fri May 21, 2010 8:52 am

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dx 1989, spms
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Postby 1eye » Fri May 21, 2010 9:39 am

cool
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Vhoenecke » Fri May 21, 2010 9:58 am

I am liberated and my first call upon my return was to a lawyer. He told me we had no case against the MS society and the government. Who will you be doing a suit against?

Val
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Postby Brightspot » Fri May 21, 2010 1:44 pm

Hi Markus77

Could you please tell us a little about what type of suit you are looking at filing? Would like a bit more info. before registering.
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Postby Zeureka » Fri May 21, 2010 5:00 pm

Brightspot wrote:Hi Markus77

Could you please tell us a little about what type of suit you are looking at filing? Would like a bit more info. before registering.
Yes, Markus, would also interest me before register - but I'm sure will participate ;-)
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Postby markus77 » Fri May 21, 2010 7:15 pm

i actually just forwarded on the link from facebook. if you go to the site there is a small welcome message with some details.
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Postby Johnson » Fri May 21, 2010 7:41 pm

Brightspot wrote:Hi Markus77

Could you please tell us a little about what type of suit you are looking at filing? Would like a bit more info. before registering.

Ditto.

He told me we had no case against the MS society and the government.

Val,

I think that is just one lawyer's opinion. I have a couple whose minds immediately jumped to Human Rights upon hearing my story, but also suggested that we would probably have more success lobbying than suing.

I have the idea of going to Small Claims Court to recoup costs. It "only" costs $250 to file a claim, and I can represent myself. While it would be nice to recoup costs, it is more about agitation, and attention to the ridiculous stance we are meeting. I won't be seeking the screening costs, as I think that would be a waste of energy - in that there is no accepted evidence that CCSVI and "MS" are connected, so common legal sense would be that I don't have the right to be screened just because I have "MS". However, I am refused treatment for a vascular problem that I have proved with my own money. To deny an obvious venous problem treatment because it is not clinically linked to another condition that I have ("MS") makes no legal common sense (nor any kind of sense), and leaves the Ministry of Health in breach of contract, as far as I am concerned. I will file to regain the cost of the procedure, and travel. I will hone my argument when I (hopefully) have my brains back.
My name is not really Johnson. MSed up since 1993
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Postby oreo » Fri May 21, 2010 9:13 pm

This whole legal action notion is a total waste of time. Even worse, it is a complete waste of good money that should be donated to research projects such as Dr. Haacke's. The only thing being accomplished here is the padding of some lawyer's bank account.

1. Being denied a non-existent medical treatment for a non-existent medical condition is NOT a violation of your human rights.

2. The fact that you believe that CCSVI is a real medical condition and that the 'liberation' treatment is a real medical procedure does not make it so.

3. In order for treatment for jugular stenosis to be paid for by the public health system, it would have to be a condition which causes a recognized health problem REQUIRING corrective procedures, diagnosed by a competent vascular surgeon etc., etc., etc. To date I have not heard any evidence that the vascular community sees that there is a definitive problem with jugular stenosis.

I would love to be quit of this disease as much as anyone else. That does not mean I am prepared to throw my common sense and good judgement out the window every time some new theory comes along. What is required right now is some good solid science of which we have little to none. I suggest that is where we should be putting all of our focus - good solid science.
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Postby Vhoenecke » Fri May 21, 2010 10:08 pm

Dear Oreo,

I did quit my disease and threw it out the window. Amazing what proper blood flow does. It clears and opens the mind.

Val
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Postby Zeureka » Sat May 22, 2010 1:13 am

markus77 wrote:i actually just forwarded on the link from facebook. if you go to the site there is a small welcome message with some details.
Ok thanks still need to check that. Just in case someone interested in this Italian court case action already performed by Francesco Scinia in Palermo! It's quite good!

Here the link of the discussion "Ci vediamo in tribunale":
http://www.facebook.com/topic.php?uid=1 ... post=87525

And here the case paper:
http://docs.google.com/Doc?docid=0AZ2va ... 1ZGI&hl=en
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Postby markus77 » Sat May 22, 2010 4:24 am

oreo i think you need to do some more research. CCSVI has been recognized by doctors in 47 different countries as a legitimate issue that is directly related to MS. furthermore angioplasty on veins is already an approved treatment. the only reason we MSers can not get treated is because we have MS. there has already been at least 4 studies already done confirming the relationship. Italy, Buffalo, Poland, Mcmasters. so this BS about more trials and research is just a ploy to give the neuros and drug companies more time to ride the backs of us MSers.
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Postby Zeureka » Sat May 22, 2010 6:42 am

markus77 wrote:oreo i think you need to do some more research. CCSVI has been recognized by doctors in 47 different countries as a legitimate issue that is directly related to MS. furthermore angioplasty on veins is already an approved treatment. the only reason we MSers can not get treated is because we have MS. there has already been at least 4 studies already done confirming the relationship. Italy, Buffalo, Poland, Mcmasters. so this BS about more trials and research is just a ploy to give the neuros and drug companies more time to ride the backs of us MSers.
Markus, sottoscrivo!
Disproportionate arguments to cause delay for keeping us worth 8 billion US$ for the worlds market pharma industry! With wow, how great for them, promising forecast for increase 2010-2025 (see link below): "Rising disease prevalence, expanding patient populations, technological advances and widening healthcare provision for MS will drive the market upwards"
- THANK YOU!!!

http://www.companiesandmarkets.com/Summ ... 285096.asp
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Postby oreo » Sat May 22, 2010 7:49 am

Markus77, you said:

"CCSVI has been recognized by doctors in 47 different countries as a legitimate issue that is directly related to MS."

a) define 'recognized' - just because a doctor 'treats' something does not constitute generally accepted recognition of a medical condition.

b) if one of those 47 countries is NOT Canada then the point is moot here.

"furthermore angioplasty on veins is already an approved treatment."

I didn't say it wasn't, but it is only approved when it is necessary to repair a confirmed / recognized problem. That is not the case here.

"there has already been at least 4 studies already done confirming the relationship. Italy, Buffalo, Poland, Mcmasters."

a) define 'study'. Anecdotal reports do not constitute a proper 'study'. As for McMaster - if you are referring to McMaster University (Hamilton), that is part of the Hamilton Health Sciences group which runs the MS clinic where I am a patient. It is also where Haacke will be running his study - a proper one - if he ever gets the necessary funding. Please note, the study has not even started yet.
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Postby Zeureka » Sat May 22, 2010 8:38 am

oreo wrote:but it is only approved when it is necessary to repair a confirmed / recognized problem


Sorry, one or several stenosed jugular veins that are clearly diagnosed by medical exams and obviously deprive brain from getting properly oxygenised - the lower blood flow can also be measured - and this in addition accompanied by symptoms of dizziness/fatigue - is not a cause-effect problem?
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Postby NormB » Sat May 22, 2010 10:00 am

Zeureka wrote:
oreo wrote:but it is only approved when it is necessary to repair a confirmed / recognized problem


Sorry, one or several stenosed jugular veins that are clearly diagnosed by medical exams and obviously deprive brain from getting properly oxygenised - the lower blood flow can also be measured - and this in addition accompanied by symptoms of dizziness/fatigue - is not a cause-effect problem?



Well put and agreed Zeureka!


Take care all


Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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