it troubles me how against ccsvi neurologists are

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

it troubles me how against ccsvi neurologists are

Postby Billmeik » Sun Apr 18, 2010 8:32 am

At this point I have images of my jugular veins that show a blockage. Dr simka from poland was in the room doing training in bc. In an hour I could get a simple angio that could break the membrane and fix my blood flow. Probably curing me of ms.
However there is another blockage. In the medical system of BC, so the operation is not being offered here.

2 people have had it done in BC with great success. Just in the last couple months.

Last november I had an ms attack that effected my balance in a frightening way. I was just a few wipe outs away from bad things like canes, helmets, and wheelchairs. It was like a preview of a path I dont want to take.

I am faced with a neurological community that thinks it is less harmful to put me in a wheelchair than to allow a tested commonly used procedure to proceed. They say it is unethical without proof and I continue to read each day glowing reports from patients all over the world who are liberated and renewed.

Neurologists vs Vascular drs.

It's Brains vs. Veins playing at the local hockey rink. The brains open with a shot to the butt! The veins come back with a wire to the throat. And they score! I'm cured.

So why the foot dragging on the part of the neuros? Lately that has troubled me. I often wrote it off as turf wars over who controls ms. But there must be more. If ccsvi says your immune system is healthy and normal but overtaxed, and neuros say the immune system is attacking itself, are there ways to prove this? My fear is there are markers that prove b over a. Or else they are just wildly out of line and will stop blocking soon.




What troubles me is that
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Postby costumenastional » Sun Apr 18, 2010 9:33 am

I think that too much worrying at this point is harmful. For me there is no other option with this. I have to try it. And hope it will work.

I dont think anyone knows better. Especialy patients are being intimidated with what i take as irational spectisism. But what else is really there for us?

All i want to say is, having seconds thoughts is always healthy. As long there are more than one options...

Just my two cents.
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Postby Brightspot » Sun Apr 18, 2010 11:05 am

It would be wonderful if someone had the time to chase down all the bizzare quotes that neurologists have made to the media regarding CCSVI. Iit would made great reading.

Any aspiring authors out there with great research skills? I would read and article,or even buy a book with a collection of all the interesting and fantastic statements neurologists have been making.

Perhaps some post graduate student could make it part a thesis having to do with propaganda in the medical system...or how persons with power and authority will disregard the credibility factor when making public statements on certain topics.

Sources and references would be needed so that denials could not be made. It would be great to record it for years to come when CCSVI screening and treatment is finally available and we want something to look back at.

I recall some neurologist (was it Freedman??) claiming that almost all new money for researching MS was going into CCSVI. and it immediately made me want to research the expenditures from major pharma on MS research, and compare it to how much is going toward any research ion CCSVI.

May even start a thread asking for detailed examples of these.
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Postby Billmeik » Sun Apr 18, 2010 1:04 pm

but what if neros just know the cns well? Like if you looked at the nervous system after toxins, like co gas or some poisons? it would show lesions and such, but would it be the same as an ms cns? What I'm getting is ccsvi is apicture of a nervous system with toxins in it, does it look like other toxic cns's or does it look autoimmune in a way only neuros can see...
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Postby babiezuique » Sun Apr 18, 2010 1:05 pm

I 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
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Postby babiezuique » Sun Apr 18, 2010 1:06 pm

I 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
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Postby BELOU » Sun Apr 18, 2010 1:44 pm

Amazing... I heard them talking and when they compared Dr. Z stuff to their hot bath thing I had to pinch myself to really believe it. He just don't want to let go his 1000 patients like he said during the interview.

Marc
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Postby shye » Sun Apr 18, 2010 2:14 pm

Billmeik
I think if the neuros COULD see as much as you are asking, we would have more answers to MS--the very fact they do not want to relate CCSVI to MS means to me they are closed minded: yet within that narrowmindedness they do not have the answers, despite years of monopolizing the MS field with their theories.
Best not to give them more power in your thoughts than they deserve.

Good luck with your search for a procedure...
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Postby nicko » Sun Apr 18, 2010 6:53 pm

Neurologists have so much power when it comes to MS. Myself when first diagnosed brought up my circulation issues which were all shrugged off as non MS issues. They weren't even written down by the neurologists. My GP actually writes down everything... The neuros don't. They seem to act like they know everything already. They put you in a category even when your symptoms don't fully match. I'm not really suprised that the understandings of MS in the last 30 years have not changed. Its their attitude that has held us back for all these years. Myself I don't understand how they cannot be open minded with a diesease that they know very little about. Its very frustrating that even now they are slowing CCSVI progress with their attitudes. Really if it wasn't for the internet the wool would be pulled over our eyes once again.
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Postby Billmeik » Sun Apr 18, 2010 8:12 pm

but do they have reason to be so negative? Is there some logic or science that could back up their point of view?
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Postby costumenastional » Sun Apr 18, 2010 11:24 pm

Billmeik, if they knew better they could have done better my friend.
Nobody knows the CNS. No one knows what even a tiny reflux caused by CCSVI could trigger over a period of years. This is a chronic condition, not just an episode that has been caught by a doppler in a single instance.
Uncharted terittory, and even if CCSVI is junk science trust me:

They dont know it. And yet, they are against it.

Please, try to think it by the vascular point of view. Regardless of MS, if there is a significant stenosis, would you let it be because neuros are saying so?

http://for-greet.squarespace.com/journa ... ponse.html

Please, check this out if not already. I think it may help you relax a bit. It worked for me. This is Simka speaking and i dont think he is to not be taken seriously.
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Postby Billmeik » Mon Apr 19, 2010 7:37 am

maybe the reason they are so out of line, closed minded and harmful is because they've seen so many cures come and go. Or else they are just sad little men who lost their toy in the bathtub. MS caused by something neurological.
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