This Is MS Multiple Sclerosis Knowledge & Support Community

Hi costumenastional, I can understand your frustration and your language, I just saw the video with Brad Stewart, reminds me of my neuro, very arrogant and not willing think "outside the box" - an overused term but fits here- very maddening. I hope all this comes to bite them on the ass.

"it is unethical to submit seriously ill patients to potentially fatal procedures"
was his reply to me.

i guess it is ethical for seriously ill patients to wait until he gives the green light before a simple balloon intervention with 100s of "anecdotal" data to support the ccsvi hypothesis.

i must insist: this man is an asshole. and assholes should not go on air regarding such serious issues. orelse assholes like me will do the same.

Well... i can see we are all on the same page acording the attitude of the majority of the neurologist.... around us

feel exactly like you about this neuro things....

Here in montreal, there is two Neuros who are in every radio and tv show. Both from the same Clinic say stupid things. One of them is my own neuro.

Read this:
'' This ccsvi thing makes me remember of this therapy of hot bath someone said ten years ago said it was miraculus and every body wanted to have this ''bath'' therapy done and where willing to go anywhere around the world to have it''

This is from Dr Jean Marc Girard ( my neuro)

This one is from is collegue:

'' why would you like to have your jugular fix if they are broken, it would be the same to have your legs veins operated...it would change nothing to your ms...

I did a doppler in a private clinic and i know i have a reflux in my left jugular... and because the neuros hold us in hostage.... we can not reach anybody who could really help us in this... crazy situation we are now!

I have an apointement with Simka and lugya.... I feel so lucky to have you all in this period of my life....

THIS IS MS saved my life.... here we can share all the information and be near to the heart beat of what is hapening in the medical field concerning ms.... Because we all now now that our neuros are not doing their job correcly... All around the world we are listening, reading.... what the neuros are doing.... about CCSVI and I try to find an logical and reasonable explanation to their reactions.... and you know what.... i did not finf any...!

I feel sorry for those who trust their neuros....

We know that rose 2 from san francisco who was in a dinner with neuros pharmas and msers.... They where all talking about new drugs.. doing like if there was nothing revolutionary hapenning in the ms world.... exept new drug. Rose stood up and talked about her libaration treament.... and they tried to evacuate this subject...saying it was not important..!

I'm waiting to be operated... every day seem so long thinking that i am loosing another day of my life beeing so tired, sleeping every afrternoon.... When i listen to neuros.... saying childish things about ccsvi... it drives me very....agressive!

Because i have you all..... i will stay calm an continue to read your comments ... that make me realize that we are having the same experience

thank to you all!
Barbara

While there are all to many dorktors venting their ignorance on the airwaves and they should be called to account, there are also many time-worn, weary and cynical physicians who have seen too many "miraculous" cures foisted upon their desperate patients. I share the following excerpt from an e-mail exchange I had with my own neurologist back in January. As you can see, so many years of unfulfilled hopes tends to make even the most compassionate doctor a skeptic.

It is understandable that you feel that way. And don't get me wrong. No one will be happier than me if this leads to a new and effective therapy (and OHSU has some of the finest interventional radiologists in the country).

That said I have been working with people with MS for 27 years and there have been many other treatments with wonderful testimonials from patients who have undergone the therapies and reported incredible results. Hyperbaric oxygen, mercury detoxification, bee stings, calcium chelation and Procarin to name a few. All have proven over time to provide little or no benefit. So I am skeptical with reason.

Dr. B

Just wanted to add a little balance.

You are right but effects seem to be dramatic in the case of CCSVI. Don't know about sting therapy but I don't think it had as much effects as a CCSVI liberation effect. Don't you think?

BELOU:
The point is that I've only been diagnosed since 2005 and I have only been actively following the discussion of alternative therapies for less than 4 months. How many snake oil salesman has my neuro seen come and go in 27 years? I don't think we should begrudge him an eye-roll or two at the outset. Let's not lump them all in together. There is certainly a spectrum ranging from Fabrizio Salvi to Mark Freedman.

Just like every endeavor of mankind there will be heroes and villains and vast ocean of spectators in between, some who are weary and cynical and others who have built up too much of a career to risk it by throwing in their lot with a theory that may prove risky to their professional reputations. These people will refuse to choose sides until the dust settles.

We with MS beg compassion from the medical community who cannot fully empathize with what we are suffering. In the same way, we should show compassion to those doctors who have been in the trenches way to long for we cannot possibly empathize with what they have suffered.

I would be more inclined to be sympathetic to their situation if one, just one of them, would revue the research, collaborate with a vascular specialist, and then with clear and unbiased facts, in a media venue, stand up and speak with us.. not down to us.

Sorry

I completely understand your frustration. The loud voices of the ignorant dorktors causes other, more reasonable voices, in their profession to keep silent.

I can name one: Dr. Carlo Tornatore of Georgetown University Hospital who is working with patients and IR docs to do CCSVI screenings. There are others, I am sure of it.

sigh, yes, I agree.. and my reply was out of frustration after having just read Chrystal's posting regarding the editing of comments out of the recent MSS webinar..

I want to believe that there is lots happening behind the scenes.. given the votility, this might be best. We don't need more 'shutdowns'.

Still a fan.

Flash, this has nothing to do with CCSVI's credibility.
It has to do with idiots saying whatever they want.

FlashHack wrote:BELOU:
The point is that I've only been diagnosed since 2005 and I have only been actively following the discussion of alternative therapies for less than 4 months. How many snake oil salesman has my neuro seen come and go in 27 years? I don't think we should begrudge him an eye-roll or two at the outset. Let's not lump them all in together. There is certainly a spectrum ranging from Fabrizio Salvi to Mark Freedman.

Just like every endeavor of mankind there will be heroes and villains and vast ocean of spectators in between, some who are weary and cynical and others who have built up too much of a career to risk it by throwing in their lot with a theory that may prove risky to their professional reputations. These people will refuse to choose sides until the dust settles.

We with MS beg compassion from the medical community who cannot fully empathize with what we are suffering. In the same way, we should show compassion to those doctors who have been in the trenches way to long for we cannot possibly empathize with what they have suffered.

You know, Flash Hack, the problem here is that the foremost neuros have taken position. The ones who are trying to play games here are the ones who have invested lot of their time in immune approach. And for some, they might lose their regular source of income from MS patients even though they have no research interest.

There is a thread in TIMS where a neuro (I guess) said that to one of the patient that MS and immune could be the biggest screw up in the last 40 years. So the opposition is not without a reason. The more stake you have, the more opposition is.

I am sure that quite a few are genuine. I have come across many a gem of Doctors. Patients like us are a great beneficiary of this noble profession and we would not say something just like that. We have been take care in best possible way (available at that time) and no reason to complain. The issue starts when they start opposing subjectively and make misleading statements ...

Just my thoughts. For record, I always enjoy reading your posts.

costumenastional wrote:Flash, this has nothing to do with CCSVI's credibility.
It has to do with idiots saying whatever they want.

I prefer to call them dorktors.

sbr487 wrote:...The issue starts when they start opposing subjectively and make misleading statements ...

Just my thoughts. For record, I always enjoy reading your posts.

Can't disagree with anything you said (especially the compliments ). My point was simply to steer the thread away from demonizing EVERY neuro and to provide a little perspective. Incidentally, it actually took several sterile and unsatisfying exchanges with my Dr. B before he opened up and wrote that simple heartfelt response. It's when they try to hide behind their big Latin words that we start getting suspicious.

Three things we're all waiting for:

1. Liberation
2. Corwardly neuro's to grow a pair
3. Dorktors to get MS (get it?)

The more they have to loose the more outrageous their comments will be, history has proven this many a time.
Credibility is at stake here, and careers. Patience my friends.

Flash...I notice your doctor's heartfelt reply did not refer to the damage done by people speaking out about miraculous effects of drugs prescribed by neuros which later were found to be ineffective, harmful or deadly... Hmmmm...