Liberation War

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

Postby elyse_peace » Sun May 30, 2010 6:01 pm

sno4fun,
my condolences on the loss of your wife & partner. :( :cry:
thank you for staying in the fight with us, even through your pain.
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Postby shye » Sun May 30, 2010 7:16 pm

thanks patientx and oreo for your words of reason..
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Postby mmcc » Sun May 30, 2010 7:28 pm

This smearing all neurologists, drug companies, etc. is absurd, paranoid and unfair.

I happen to agree that some drugs and treatments for MS should be "fast-tracked" and even made available on compassionate grounds before approved. But, that is NOT a substitute for testing and verification. Even Dr. Zamboni has been clear about the need for that.

I have read people on this forum screaming about Tysabri. As one who did everything I could to get it approved, I wonder why you think it should not have been approved? Those willing to take the risk should be permitted to do so. Same with CCSVI, but I would point out that 2 YEARS and thousands of patients of testing, there had not been ONE SINGLE CASE of PML. CCSVI has been around a lot less time, and been tried on massively fewer people, yet some people here act like it is risk free....... consistentcy?????

Everything I have read here indicates that re-stenosis occurs in about 1/2 the cases in less than a year. Several MS drugs have been track records than that - Novantrone and Tysabri for example. Does that mean we should not do CCSVI? Of course not - the potential benefit is greater, but it is certainly not more effective for the majority than some of the MS drugs available.

What is more accurate is that it APPEARS to be more effective for SOME people than currently available MS drugs. Less than a year is not sufficient testing to say more than this.

As to the neurologists - mine arranged to work with a vascular surgeon and they have been doing the surgery. My daughter had it last week. I am having it this week. The MAJORITY of neurologists are not bashing CCSVI, even if they are not ready to arrange to have it performed yet. More accurate would probably be to say that many neurologists are waiting to see the results of more studies.

Personally I want a neurologist who is totally aggressive in treating my MS, but many people are not willing to take as much in the way of risk for many varied reasons. Even though Tysabri helps about 3/4 of people who take it, there are people here demanding CCSVI (risk is NOT known) with a success rate of less than 50% in the first year when the risk of serious complications from Tysabri are 1 in 1,000. A few I remember from another Board and did not want the FDA to make it available for MSers to decide for themselves. Consistency, folks.....

I am possibly more furious with a drug company than many others, but I am not furious because they are "evil." They aren't evil any more than other companies. They are in this to make money. A better overall place to direct anger would probably be at the federal government - who SHOULD be developing drugs so that we don't have to depend on for-profit companies to do it.

I've been on a drug for more than a year which is working extremely well for me - zenepax. The supply ran out this month. Why am I mad? Because the drug company is in FDA testing to have this drug approved for MS use. It is currently a kidney rejection drug. There are now better kidney rejection drugs available, so its not worth their while to make it.

There are very few MSers outside of the clinical trials who use zenepax, but the company will not make it available to us even though it is working. They are, however, keeping the drug testers supplied and based on the results of the testing so far, the results are terrific. That means that in a few years they will announce its approval for MS and make multi-billions from MSers. But, they don't mind shafting a few of us on the way.

Am I furious - yes. But, I know why they are doing this - MONEY. Plain and simple - not evil, just cash.

Paranoid rants about "ALL neurologists, ALL drug companies, ALL MSers." are very counter-productive, and make us all appear a little looney.

I made it this far, not because of federal government research, but because the same "evil" drug companies developed drugs which saved my life as a child, so I could grow up to have a chance to develope MS, and have given me 3 drugs which improved my condition a total of more than 5 years.

And every one of the DM MS drugs has been developed during my lifetime. Ditto with all the "symptom" drugs I take.
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Postby Cece » Sun May 30, 2010 7:39 pm

mmcc wrote:Ditto with all the "symptom" drugs I take.

You make some good points. Provigil, for example, has changed my life and I wouldn't say that lightly.
"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
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Postby lilsis » Sun May 30, 2010 11:13 pm

Tomorrow morning we meet with the Human Rights Tribunal of BC to discuss a claim of discrimination against persons with MS in their efforts to seek vascular testing, consult and treatment. In reviewing countless research articles regarding MS, CCSVI, and other vascular disorders affecting the head and neck, as well as over 40 personal experiences of British Columbians with MS being refused what is afforded British Columbians without MS, there is no question that persons with MS are being discriminated against at every level of the medical food chain.

If neurologists were vascular specialists we wouldn't have an issue. But the problem is that neurologists here at home have been given supreme ruling over the vascular systems of MS patients and are making decisions they have no right to make. Why and how this has occured escapes me, but this is what we hope to change. We have stories of IR's who admitted they have the skills and capabilities to provide testing and treatment, but they are not allowed to do so. The circle of blame forever comes back to the neuros. I agree that the silence of vascular specialists and interventional radiologists and other medical professionals who recognize the common sense of this discovery is deafening. I hope their humanity will prevail over fear of repurcussion for doing the right thing. Because that's all this is.

Testing and treatment without delay is the equivalent of pullling a drowning person from the water.

It's not too late to include your personal experience. I leave at 8am so it would have to be sent to me before then so I could print it. my email address is gvalentic@hotmail.com, you need to include your full legal name, address and care card# (proves you have BC health insurance). It's a class action claim.

Gwen
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Postby muse » Mon May 31, 2010 1:42 am

Thanks dear MS-Direct & thanks dear Gwen. I’ve done my complaint with the HRC 2 weeks ago in NZ and yes I’m as mad as hell too! :twisted:
Best Arne http://www.csvi-ms.net/en
complaint: http://bit.ly/a3vbem ....feel free to copy & past!
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Postby nicko » Mon May 31, 2010 12:50 pm

mmcc

You have a different view them most of us, mainly because you have a neurologist that is willing to help you. That's not the case for most of us. Try walking in our shoes when ever door you try to open is shut by neurologists.
My neurologist tells me that blocked neck veins are perfectly safe. I've even tried contacting Vascular dr's which seem to read off the same prepared speech. That I have to go through the MS clinic for treatment. This is where the bad mouthing and conspiracy theories come from.

My opinion is neurologists shouldn't have a say in this at all, refer us to vascular surgeons etc If your blockage is severe enough they should decide if we need angioplasty stents etc. Neurologists don't specialize in this, they should have no say whatsoever. If they won't refer us our GP's should. I believe we should keep fighting this with whatever means necessary until we get the right for proper treatment. I truly believe they are violating our human rights.
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How does he do it?

Postby NZer1 » Mon May 31, 2010 1:20 pm

A new question has been posted on the Multiple Sclerosis Society of Canada's MS Answers website:

Q: What is the status of the Ottawa Bone Marrow Transplantation study led by Dr. Mark Freedman and Dr. Harold Atkins? I know recruitment began in 2000 and that, as of January 2005, 11 people received transplants. In 2007, the MS Society announced an additional $2.4 million to continue the trial. We are now in 2010. Any news?

A:All patients have been fully recruited and transplanted (ie. 24 in total) with follow-up now at 6 months – 8+ years. A full clinical report is being submitted for publication this year. The results have prompted discussions with the Ministry if Health to add BMT as a reimbursable treatment for MS.

5/31/2010
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