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.