NMSS Updated CCSVI statement - alludes to Dr. Dake and Holly

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

Postby magoo » Wed Dec 02, 2009 4:02 pm

Cheer,
Personally, I feel a debt of gratitude to you and Jeff. Without your willingness to share the information about CCSVI and Jeff's surgery I would not be feeling as good as I am. :) THANK YOU!

It is unfortunate that some people focus on negativity. I'm not saying don't discuss the negatives here, but please do so without insulting those of us who have believed enough to go forward with CCSVI treatment. Some people just blurt out crap and want an argument. (not singling anyone out here) I feel it is not productive. Discussing the FACTS about CCSVI will continue to show the BENEFITS and proof that it has a connection to MS. (and possibly the answer to MS)

Until YOU have the surgery and feel the benefit...please think before you comment. We don't have all the answers or proof yet, but there are amazing connections that should not be downplayed.

Please don't regret coming here and sharing with all of us Cheer. I count my blessings everyday I wake and don't feel the heavy cloak of MS hanging around my neck. What a blessing! You have made a difference in many, many lives, mine included.

I am not worried about the negative press or even the uninformed. I know this is real and time will correct all of this mess.
I often wonder why, if people are so slanted towards disproving this, do they come here? A place where we are the patients of CCSVI and the hopeful.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Wed Dec 02, 2009 4:10 pm

Rhonda! Well said!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sharon » Wed Dec 02, 2009 4:25 pm

Ozark and bestadmom -

I liked your rant. No need to apologize. Bob's comment was rude and uncalled for.

enough has been said --- Bob is enjoying the spotlight -- turn off the lights.

Sharon

P.S. thanks for your concern :) :)
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Postby cah » Wed Dec 02, 2009 4:36 pm

Cheer, two words at a distance of 6.000 miles: Thank you.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Johnson » Wed Dec 02, 2009 4:54 pm

ozarkcanoer wrote:Pardon my previous rant. I am fatigued, I have a splitting headache and I have MS. :cry: :cry:


I found your rant to be quite succinct, and I appreciated it. When I read "and I have MS", I snickered.

I have been feeling pretty cruddy the last 6 months, and I have been having rants of my own. I have ranted a lot in the 16 years since my first optic neuritis, but strangely, I have been even edgier since I have learned about CCSVI. It's probably a subconscious, or unacknowledged fear that it is too late for me, or I will find that I have no jugulars to do venoplasty or stenting upon, or that Dr. Simka will be shut down, or...

My Plan C is Indian doctors. They would be even "cheaper" (in comparison to Dr. Dake's $80,000). You can get a complete coronary bypass for $12,000 US in Chennai. Or Goa, or Delhi, or Mumbai, etc. The doctors are trained at Johns Hopkins, Harvard, Guy's, etc., and the hospitals have international accreditation. The WHO ranks these hospitals significantly higher than American, or Canadian hospitals.
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Postby Johnson » Wed Dec 02, 2009 5:26 pm

I would also like to express my deep gratitude to you, cheer leader, and to your husband, for bringing this breakthrough to light. I would know nothing of this therapy, if not for you.

Because of the W5 piece, and because of the information that I have gleaned from this forum, I have e-mailed Dr. Simka, and asked if he will treat me in the New Year. We have been planning to be out of Vancouver for the Olympics, but had no plan. This has all arrived in the most synchronistic way. Winter in Silesia... I never would have dreamed.

As your husband has described, it has been a steady drip, drip, drip, for the last 16 years for me, and I had finally resigned myself to the idea that Secondary Progressive was arriving in my life. The RR was bad enough, but I finally had a child three years ago, and I feel sorry for him having to deal with my problems. I can't stand to tell him that I am sorry for being grumpy, that I am sorry that Da can't dance with him right now, etc. I am enervated with hope all of a sudden.

So thank you, and everyone who contributes here, from my family, and from me. Don't be dejected by any perceived negativity. I simply feel sad for those who have even less hope than I have had. I think that it is very possible to become invested in invalidity. I find even myself having trepidations. MS is all I have known for a third of my life, and I have so often tried to remember what it is like to feel as I did before 1993, and I can't. I hope that like the Italian fellow who cannot remember what it felt like to be ill, that I, and all of us, will soon know that same relief. I have always rejected the drugs, stem cell, etc., but I feel in my heart that this is it.
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Postby Lyon » Wed Dec 02, 2009 6:16 pm

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Postby magoo » Wed Dec 02, 2009 6:33 pm

My, my, my...........
People, (more than a few) who are benefitting from this have every right to give their information. I resent the statement about enraged mother bears!
I happen to think "our" results after surgery are a happy thing and should be shared. Believe me if my MS hadn't changed I'd tell you all about it.
We are aware of the risks. We are not afraid to talk about them. There just seem to be a lot of arm chair doctors weighing in. I for one will not make statements sounding like fact.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby ozarkcanoer » Wed Dec 02, 2009 6:50 pm

Lyon...

Here is what I am doing to "prove" or "disprove" CCSVI and MS :

http://www.thisisms.com/ftopict-9082.html

What are YOU doing ?

ozarkcanoer
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Postby Lyon » Wed Dec 02, 2009 6:52 pm

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Postby Lyon » Wed Dec 02, 2009 7:04 pm

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why call names?

Postby prairie » Wed Dec 02, 2009 8:54 pm

Calling people Hari Krishnas, or bandwagon members is just a form of ad hominem attack in my view. Discussions pro or con about CCSVI ought to be on facts, results, not on calling others names.
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Re: why call names?

Postby Lyon » Wed Dec 02, 2009 9:16 pm

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Postby frodo » Thu Dec 03, 2009 5:50 am

Lyon wrote:
ozarkcanoer wrote:I suppose you are one of those people who still think the world is flat and is only 6000 years old. Skepticism just for the sake of skepticism is meaningless.


In fact, doesn't it seems similar this discussion (Zamboni vs MS society) to the old Galileo vs Catholic church about earth rotating? I really find the reactions now very similar to the old ones.

I think he was complaining that the people that opposed his theory was not even willing to take a look through his telescope.
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Postby gekiryudojo » Thu Dec 03, 2009 9:42 am

My first post


http://www.youtube.com/watch?v=CdV8LkyTfU8


I hope this is useful

and the news today
http://i180.photobucket.com/albums/x32/ ... ture15.jpg

You have not heard of me But I have been busy this last week It was me that Got the BBC to put this up last thursday night a 11:50pm

http://news.bbc.co.uk/1/hi/health/8374980.stm

Happy fighting Trev
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