This Is MS Multiple Sclerosis Community: Knowledge & Support

First I am not a lawyer, never have ever had a desire to be one, thank God:)

It's apparent that people with MS are being discriminated against when it comes to treating CCSVI. The Candian medical community will not test or treat MS patients for CCSVI (stenosis of the venous system)

Common statement by those responsible is, not enough research data has been published to determine a link between MS and CCSVI. We care taking a wait and see position.

So perhaps we need a little bit of green like thinking call it Group Think.

Now my dear wife Laurie has suffered with disease for 20 years and it has followed it course to the primary progressive stage. CCSVI for her would represent in our minds, relief and possibly stopping any further damage.

Okay, now I sit here typing and I am going to back up the clock 20 years, my wife is young, beautiful, talented and committed to her profession as a registered Nurse. Our world back than was a lot of testing, study programs Betafaron (Ottawa). Auto immune drug based therapies. Still is.

I have watched my wife deteriate from a life loving responsible member of our society to a disabled totally dependent MS patient. We did what we were told, we went were we needed to go to fight this, yet here we are.

Now I am being told that the one thing that has ever made sense to me or her is out of bounds due to a lack of a study. Yet stenosis is stenosis, CCSVI is a proven medical malaise with treatment protocols. Yet if you have MS it will not even be considered as a prognosis, therefore no treatment?

So my Group Think, All MS patients need to see their GP's, specialists whomever to write the orders or officially put in writing your current condition.. WE need to establish your degree of disability as of November 2009. ( the airing of CCSVI-The Liberation Treatment). Its when the world became aware of Dr Zamboni's research.

My point is this , if CCSVI is found to be a contributor to MS, since the Canadian Medical Association has closed the door on treating MS patients for stenosis of the venous system (because they have MS). Would it not be prudent to have a baseline of your MS affliction.(ASAP)

Lets say it takes 5-10 years for this process to work through, that means there are a lot of RR MS patients that are going to progress just like my wife.

What recourse will you have if CCSVI is truly the cause of MS, will it not be a little late for some.

Why can we not unite, start a Class Action filing, lets get the MS patient base line data on file than put some political pressure on these SOB's that want to take this wait and see approach.

For every Canadian that progresses from this point forward, let the Canadian Government, Provincial Governments, Medical Associations and whom ever understand there will be accountability.

This is no joke! Our loved ones are suffering and we must do what ever it takes to make them LISTEN.

Do we have any Leagle Eagles amongst us that know how to carry this forward?

Please everybody, take this thought seriously, If the dream of CCSVI is ever to become mainstream than we need to put on the pressure. A Class Action may not be the best way I just want us to line up our ducks, what are our options?

All in my opinion only

-keep the heat to the feet-

BB

Hi BB:
I sent out 23 letters and e-mails to vascular surgeons in eastern Ont with my husband's Doppler Scan which does mention MS. All the replies that I received, except one ( My GP hasnot written out a requisition yet, so I don't know where that will lead us), stated that they were not dealing with MS patients. If MS hadn't been printed on the scan I am positive there would have been doctors who would have seen my husband. Isn't this a form of discrimination??
Regards Diana

It is discrimination and it's kinda shocking. I can see a GP not ordering a doppler because of not considering m.s. enough of an indication...but once a doppler is in hand, I can't understand why it wouldn't be treated like the doppler of anyone, m.s. or not, and lead to a venogram if indicated.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

This is non-sense.

I think the best way is to organize some kind of alliance and then hire a lawyer to look at the case.

I continue to seek a logical answer that satisfies me to the above mentioned question about us being discriminated against. I have sent 3 e-mails to Deanna Groetzinger. Today's was not a calm, composed me, it was an emotional, angry me. I thought I'd lay out the question again and see what comes my way. This is what I wrote:

----------

Just wondering if someone could give me an answer to these two questions:

1. Why, if the MS Society knew about this theory, didn't do anything about it until we flooded your phone lines and e-mails. And don't tell my you didn't know. If you do that, I know it's inaccurate and for the sake of argument, if you didn't know then shame on you. That's your job. So why?

and

2. Why is it ok to have vein malformations and walk around with them just because I also have MS? Inadequate blood flow is not good for anyone. Would we need studies if I had vein issues and I had diabetes, cancer, over active thyroid???? Why is this pre-existing condition being such a road block to us?

I am continuing to seek logical answers to why we are being discriminated against. I have yet to receive anything from yourself or the health minister etc. that has adequately answered these questions. Your replies are basically someone just nodding their head to me, smiling and then responding as if nothing I've said has registered.

I don't have 'writers' for me or lawyers working on my behalf as to what to say that would be politically correct in my response. Right now I have a very upset little girl because I can't take her out because of my MS or shall I say my CCSVI.

Tysabri has infected some 42 brains and killed 9. This drug is still on the market. Where is the logic???

my doppler, positive for ccsvi, also uncovered a couple of small thyroid cysts.. i'm trying to figure out how to leverage this info.. the healthcare system has to deal with me now.. but but but.. thyroid cyst symptoms mirror some ms symptoms...bit of a twist for me.. plot thickens..

p.s. this is discrimination of the worst form..! and i can't imagine that the Canadian Health Care System is not reeling at the thought.. class action possibility on one end and the 10's of thousands of us along with our children lining up for diagnosis and treatment on the other..

As a former premier of NL once said,
"The Time Has Come"
Well people I agree with BB, the time has come for us to stand up and fight for our democratic rights on this very important issue, that has affected our lives.
In my case about 20 years of my 54years. I am so sick and tired of the neurological ear and nose games, and all the so called DMD drugs, which may I add, has cost, let me see now, 11 years on Rebif, thats 24,000 a year and and 1 year on Avonex, thats $15,000 a year, 11 years total (by the way thats just "DMD", not counting all the other s... I was on)so thats a grand total of appx, $280,000 in 11 years of treatment,and I'm sure we all have the same story. I have to wonder, why the insurance companies are not taking a more vital role, surely we must be draining these guys, oh well.

We should seriously consider a class action suit against the governments and oh, lets not forget the medical community, who for all these years, ( I'm afraid to say it misdiagnosed us????????????, oh my, there ya go, I said it

Some here are quite seriously speaking about legal action.
We need to take back control of our MS orgs and have advocates
for what we want. Who the hell gave so much power to them? We
might want to answer that question for starters.

A group of people I know here lost control of their pension because they blindly believed
in the controllers only to wake-up one day to the news that most of the funds were gone.

They have now wisely started action to get joint trusteeship
of the billion dollar pension and what money remains. Possibly something similar could be considered.

I wonder how the 60million dollar EndMS campaign will be alloted.
Is any of it designated for CCSVI research?

'The Time Has Come'

Newfie-girl you are so right! thanks to cece,pcakes,annad,broomdancer for your supportive comments. I have sent an email to a canadian law Firm Siskind. They advertise Class Action as a specialty.

They have a question portal so I sent them the following:

I/We believe that the Canadian Health care System is discriminating against Canadian citizens diagnosed with Multiple Sclerosis. Due to the pre existing condition of MS, patients are being denied basic recognized diagnose and treatment protocols of extracranial venous blockage.

Another words if you are healthy and present sysmptons of stenosis of the venous system you would be tested and than treated. Not so with people afflicted with Multiple Sclerosis. Our members are being told that because you have MS a venous specialist will not touch you, its our understanding that the Canadian Society of Vascular Surgery have gone on record and told there association that if they treat anyone for extracranial venous blockage and they have MS they will be subject to discipline. I/We know nothing about the law we are humble law abiding citizens who have watched our loved ones deteriate into the abyss. WE need HELP.
Please view this link, it indicates the desperation of MS sufferers versus the Research community. Especially note the post from
K. Ross DEC 22, 2009, 8:47pm
Her thoughts are reflected by all MS sufferers in Canada not withstanding the hope any positive results of the current CCSVI research.

http://scienceblogs.com/whitecoatunderg ... /12/ms.php

Hoping for a continued dialogue, we have many questions.

Thank you
Bill Larsh
Caregiver to my beautiful wife
Laurie.

One way or the other this course of action needs to be perssued. A lot of like minded people are doing a lot of amazing things in our communities to spread the word about CCSVI.

But this is different!!! This is a medical abnormality that if, you were healthy and presented symptons, the Canadian Health care system will diagnose and treat.

I am sick and tired of MS sufferers being pigeon holed by our medical profession. Do you know how many times we have gotten the 'you have MS live with it look' Its now gotten to the point were our next step is a nursing home.

I estimated that it costs Canadian Taxpayers at min. of 50-75,000 a year to support her and she still lives at home, I am retired and i am rarely out the door. This is not a pity party its life but like i stated in an earlier post if this was 20 years ago and this information had come to light I would be knocking down doors to get her the help she needs.

The MS Society is having a webinar on Wed April 7, 2010, go the site and sign up if you have not yet. I suspect it will be a lot of chest beating look what we are doing, raw raw. Alas i will give them the benefit of the dought.

All in my opinion

keep the heat to the feet

BB

After I came back from Poland in November, I contacted my neuro to discuss my CCSVI treatment. Not only did he not want to see me but he emailed I should never contact him again. I knew he must be threatened as he peddles Tysabri and the like. I have kept the email. I thought it might come in handy one day.

Phil

Not a penny will be advocated. The researchers have to compete to get a mere 100 000 from the society. I don't think we can legally go after any doctors or governments in Canada but maybe there is a case against the MS Society as they gathered funds supposedly on our behalf. I wouldn't want a sleezeball like Tony Merchant involved but someone that has a vested interst in MS.

Val

Well said. You might find this info interesting. I looked up the new grantees for EndMs (decided in the first part of the new year) and our
hard earned raised dollars were given to a new recipient $500,000K
to study b-cells. Trials have already been completed using
Rituzimab (CD 20 drug) and I'm wondering why this researcher has
gotten this amount when so much has already been looked at
especially at Montreal Neurological Institute.

Sorry, but I think we should not think about lawsuits but rather spend our efforts, time and money trying to find doctors willing to see us and treat us and supporting the researchers and doctors who are currently or will be trying to validate (or not) the CCSVI theory. We should put our anger to constructive use !!! cheerleader look for an IR and was lucky to find Dr Dake. We need to keep our message positive. Support Dr Dake and Dr Zivadinov and Dr Haacke and most of all Dr Zamboni !!!! I have been scheduled for two MRI/MRVs since last November and both were cancelled due to "political" and technical reasons. I am incredibly frustrated but I don't really blame anybody. Let's keep this CCSVI advocacy positive !!

ozarkcanoer

Ozark, this is a Canadian issue, we are the land of socialized medicine, if you are sick it is our Governments (federal and provincial) and the Health Ministry of Canada responsibility to diagnose and treat. For your information I personally have been sent stateside for a procedure not readily available in Canada all expenses paid. Cost about 25,000

This has nothing to do with CCSVI except it has directed MS sufferer's in Canada down a new road of possibilities.

No disrespect to your opinion but our hopes for CCSVI are as high as anyones, I just do not personally think it will ever see the light of day (too much money)

Point being if we can obtain treatment for stenosis of the vascular system that is readily available to any other Canadian that has not been labeled with MS than WHY NOT SUE THE SOB's. It may be our only hope.

As a side note, when are people going to wake up to the fact that BIG MONEY is not going to give up the golden goose because a few fragmented CCSVI research studies are being conducted. Stupid in stupid out. We all need to get our heads out of the sand.

all my personal opinion

keep the heat to the feet

BB

Hi Ozark..you are not wrong.. I think this string, however, reflects thoughts in the Canadian Health Care world.. it's all or nothing up here.. there is nowhere to look for brave and pioneering doctors as our Healthcare System dictates who what where they can see do go. There are some private clinics.. but they too are governed by Universal Healthcare and ,to date, are not permitted to treat CCSVI. Some, like False Creek Surgical are working hard to change this.