This Is MS Multiple Sclerosis Community: Knowledge & Support

I see a positive side to this. Neuros and others all round the world are clearly in panic mode re CCSVI. Their knee-jerk reaction is Win-Lose viz. they win and we lose, however this won't work for very long. They're parroting the same old tired lines - stents/danger/placebo/many years/ppms no effect/hbo/stem cells china/bee stings etc. They'll need to wake up to themselves pretty soon - boning up on Stephen Covey's Win-Win philosophy will do them no harm or it will become Lose-Win before long.

Phil

OK... I recently read Cheerleaders FB post on cognitive dissonance and thought I'd try to have compassion for the neuros disconnect... but after watching that video, I'm having an extremely difficult time... pissed off is more like it... The guy was just plain rude and misinformed... Who I'm really feeling compasion for any PT that has to deal with him...



what the hell????


What I propose is a Sh*t list... maybe a sticky we can all contribute of those neuros who are naysayers of CCSVI... especially vehement outspoken morons ones like Dr Stewart ... I say this so in a few years we can remember them so we can boycott when the research shows a correlation and "scientifically" proves it helps...

This way, we can drop these idiots for the "real" neuros. who are genuinly compassionate and really care about US.. and not their wallets.. If we all make an effort to drop these guys, the wallets will hurt for sure..

Another thing that guts me is how Neuros put people on Tysabri and will have you beleive CCSVI is a killer!. Hello!!!!!!!!!

thats the catch 22 'a non neurologist talking about a neurological disease'.


what if it isn't a neurological disease. what if it was a neurological symptom from a vascular disease?

Doctor Stewart:

"I understand desperation. I look after hundreds of MS patients."

Right, if you are treating someone for cancer, you know what they are feeling and going through, because you look after them right?

Very arrogant and pompous.

http://www2.canada.com/health/living-wi ... id=2219442

Hmmm....

<Snip>
Two decades ago, physicians could do little but help patients manage symptoms. But by the mid-1990s, disease-modifying Interferon drugs were being used to slow the progression of the disease.

"Those drugs can alter the course of the disease to some extent and cut down on exacerbations by 30 to 40 per cent," says Edmonton MS specialist and University of Alberta assistant clinical professor Dr. Brad Stewart.

However, Vancouver MS specialist Dr. Stanley Hashimoto says their effectiveness was not as significant as initially believed.

"The marketing exaggerated the impact," he says. "All of us involved in multiple sclerosis thought we needed something better. But one of the things that came out of all of it was a much greater interest in the disease. A disease that had had a very low profile now had become a high-profile disease, so a lot more money was put into looking for treatment."

More research and new disease-modifying therapies that reduce symptoms and relapses are having a major impact on the quality of life of people with MS.

"The way I ask my patients to look at it is that the drugs they are on are good," says Stewart. "The next ones coming up are great and the ones that are coming after that are even better. It's an awful thing to have MS, but all the research over the last 10 or 15 years is really bearing fruit. The promise is huge."

"If you have MS today," says Wong, "You are in a much better place than you ever have been, not only because of the treatments that are available that were not available 15 years ago, but also because so many people are interested in the disease."

Interesting...
Cheers,
Hope
Edited to say : it appears that Dr Stewart has a vested intersted in drug therapy.

_________________
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Dx March 2003
Avonex

I seriously wonder what Dr. Stewart has to say about another study's recent results below...Why are they not speaking out to caution patients about this??? I do not hear "Stop the drugs! Be patient, let more research and clinical trials be done first (so we can make sure you go on the right drug)!" Their silence on this latest news is deafening!!!! And they want us to think that they care about us - and they are trying to protect us...from CCSVI?????

That's my rant for the day!

Take care and God Bless,
Chrystal

http://www.boston.com/business/healthca ... p_Emailed3

For many, MS drugs not helpful, study shows
By Rob Waters
Bloomberg News / March 29,

SAN FRANCISCO — Multiple sclerosis drugs from Biogen Idec, Merck KGaA, and Bayer with sales of $6.1 billion work for fewer than three in four patients, and a test can predict which ones, a study found.

Researchers at Stanford University analyzed mice with an induced disorder similar to MS and blood samples saved from humans with the disease. They found two subtypes of disease, each driven by excess activity of a different set of infection-fighting immune cells. Only the patients with one subtype responded to the MS drugs known as beta interferons.

In MS, the body attacks itself, damaging the insulation that protects nerve cells and disrupting their ability to transmit electrical impulses and move muscles. About 2.5 million people worldwide have the disease.
The study, published yesterday in the journal Nature, reveals why beta interferons, widely used drugs that suppress immune-system activity, don’t work for everyone.

“A lot of people are taking beta interferons who should not be and it may make them actually worse,’’ Lawrence Steinman, a neurology professor at Stanford, said last week.

The test measures blood levels of IL1 and of IL17, the two immune cells Steinman and his colleagues linked to different forms of the disease. Patients whose disease is driven by IL1 respond to beta interferon drugs, while patients with IL17-linked disease don’t, Steinman said.

“This information could allow us to better select a group of people who are likely to respond in the first place and to optimize use of the drug,’’ said Dean Wingerchuk, vice chairman of research at the Mayo Clinic in Scottsdale, Ariz.

The leading beta interferons are Avonex from Cambridge, Mass.-based Biogen, with 2009 sales of $2.3 billion; Rebif, from Merck KGaA, of Germany, with $2.1 billion in sales; and Betaferon, by Bayer AG, also of Germany, at $1.7 billion in sales in 2008.

Biogen Idec markets the MS drug Tysabri with Dublin-based Elan Corp. It strives to offer a range of options for multiple sclerosis patients, said spokeswoman Naomi Aoki.

“We’re excited about the prospect of taking a more personalized approach to identifying patients who are most likely to respond to different therapies,’’ Aoki said.
© Copyright 2010 Globe Newspaper

~~~~~~~~~~~~~~~~~~~~~

Thank you Johnson for starting this thread, and to everyone who has contributed!

I cried and laughed my way through every post, and when I was finished, my heart and mind were reinvigorated. (My oxygen deprived brain, less so.)

This well informed, determined, passionate and articulate community will prevail!

it seemed like a bit of an ambush with everyone on the golden boy's side from pharma. It really didn't matter what dr g had to say he was not going to be heard anyways.

I don't know. I don't blame any of you if nobody has enough money for a Shit List of doctors. I suggest we do it. I was not going to get dragged down into these neurologists' muck. Into their lying, fear-mongering manure. The more I see, the more I want to. All neurologists are not at fault here. I blame some of the out-of-control behaviour I have seen from a few. One of them used to be my own neurologist, so I know.

If someone has the energy or the money or whatever it takes. But I think the reason for a Doctor's being on a Shit list should go next to his or her name. I think all effort should be made to include whatever address can be found for them. But most of all, I think MS (so-called) patients should vote with their feet. Stay away from these guys. Get a name of a better neurologist. They can wait until, through their GPs, they have been Liberated, They should not renew any medication that they feel they no longer need. If they really need a neurologist, they should check the Shit List first, and then ask their GP to refer them to one who is not on it. They will exist. But don't go to the Shit Listed ones. They will take advantage of anything you say or do, that they can.

Dr B Stewart bounces. Try addresses found attached to papers in PubMed. Especially if you heard yesterday's performance with Dr. Zamboni. One guy, in answer to a question from an audience of PwCCSVI and caregivers, invited by the MS Society, put up a slide of a Zamboni machine. Borders on xenophobia if you ask me.

Maybe we need some renegade nurses, doctors, and even neurologists willing to answer phone calls from people who need some medical information, or just reassurance that no, the big bad MS is not going to punish you for your straying from the One True Way of the Only People who Really Care about you. They don't. There are more people here who care more.

Vote with your feet. Or canes, wheels, whatever.

No neurological or medical advice should be inferred from this message. If you're as mad as I am, you shouldn't need or want it. Maybe I should just go to bed now.

We should also keep a whitelist of those who are OK with it. Call them up. Or if an appointment is coming up, ask them. But ask.

And White and Shit should be as secure as a bank, no media, no lawyers, no press, no doctors. Patients only. Maybe if we use Visa, check identities with police, and check credit? We can charge $100 or so for membership, to be used for expenses on this site. Free if need be. Can this be done? I don't want to be a professional patient any more than you do, but sometimes you have to.

Good night.

I received a response from the good Doctor.

Here is my note:

Wathched your performance on Alberta Live. Just wanted to clarify the facts.

#1 - Regarding the gentleman with the stent issue. Dr. Zamboni has made it clear he does not approve of the use of stents. Angioplasty is another story altogether. Maybe you didn't realize there was a difference.

#2 - The woman who died due to the blood thinning medication had a pre-existing condition.

I completely agree with you regarding the need for further studies. What I don't understand is the agressive, not willing to listen to other possibilties, attitude.

Can you explain why there was no outrage within the neurological community when Dr. Freedman's pet project killed a 42 year old father of two. That was far more experimental and dangerous than angioplasty. He also was convinced, and didn't have any concerns about "placebo" effects, when his third patient (he only had 3) could walk in high heels. That was enough for him to say it was a cure.

Here's the link to the CTV report from February of last year so it's not just my word.

CTV.ca | Quest for a Cure: Going to risky lengths to treat MS
www.ctv.ca (just cut and paste)
Regards,
Michelle Klim

Here is his response:
Sorry to have disappointed you. Please read the original report by Zamboni. I suspect that I am guilty of expressing the views of virtually every neurologist and thus killing the dream of an easy fix for MS. I know that Zamboni wants no stents to be used but he has propagated an irresponsible and non-evidenced approach to a very complicated disease. I truly hope there is some merit in his work but it is of such poor quality that no-one can say. Neurologists in Canada are currently looking at his ideas and will answer the questions that need to be answered shortly. Mark Freedman is a colleague and is considered one of the foremost MS experts in the world. The patient that died was rapidly progressing and had no hope with conventional treatment. They were enrolled in a clinical trial and informed consent was obtained. MS kills people and MS treatments kill people, too. Doctors must offer evidence based treatments and not sell false hope as science. Currently, it is grossly irresponsible to offer plasty to anyone until the relationship between stenosis and MS is established. It is far from a given that there is any relationship.

Anyway, thanks for your thoughts. Let's hope that a better understanding of this awful disease comes from all of this.

Oh my, a bit arrogant, isn't he?!

In my unfortunate experience with several neuros, his attitude is totally consistent with those I've encountered.

Do they actually teach this "I'm the expert; don't question me" arrogance in medical schools?

Mum

Oh, I don't think I can bring myself to watch this. I was already scolding myself for wasting time listening to Dr Freedman on the Current ( radio show). That was miserable enough!
Reading his email back to the woman above, I see that it is okay for neurologists to treat on a compassionate basis with informed consent.....that's what a lot of us want!! Also, I hate it when they say, "MS is a very complicated disease..." WELL, obviously for them it is, because they won't look beyond the end of their noses.
Even when Dr Zamboni does a more complete study (MADE POSSIBLE BY FUNDING), they will still be trying to deny it....it's all stall stall stall...they should have been politicians.
I'll watch it eventually, but I need a break from the zealot negativity.
Definitely would not go to these Neurologists (and someone should remind him, that not ALL neuros agree with him), but don't think I want to use a visa card to have access to a list on line....

just sent him my wishes to go f himself
guess what! this address doesnt work anymore...