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Old 12-23-2009, 07:32 PM #21
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More hope going into 2010!

Edit: Blah link won't work!

Basically (excerpt):

December 22, 2009 — As 2009 draws to a close, the National Multiple Sclerosis Society (NMSS) has taken stock of some of the research highlights of the year that was and is looking ahead to 2010.

Among its priorities for 2010 is a call for grant proposals to investigate the potential link between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS). The society has issued an international call for grant applications to look at the CCSVI hypothesis in MS.
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 12-26-2009, 10:50 PM #22
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I am a true believer in the CCSVI Liberation Treatment. I will have patience, hard to do , until they get all the bugs out of the testing and surgery. I pray it will be soon, PWMS need hope. It keeps us going, IMO

When I went to my Neuro on Tuesday, she saw the file folder I had brought with me on all the info I have accumulated on CCSVI. She knew of it and was very interested. She had other patients bring her info on the same she said.

I gave her more than she knew existed on the treatment. She plans to study it and discuss it with the many doctors at the hospital she is affiliated with. She will gather more info and knowledge she said.

She is all for the procedure, even with the stent issues in veins vs. arteries and their side effects. She said more training and testing will be done. This hypothesis/procedure has been brought up many times in the past with no follow through. Perhaps it will be taken more seriously now she said.

Blockages are not good to have for anyone. Especially total blockage of more than one of five (two internal and two external jugulars and one Azygos in the chest, with back flow). Some have small kinks, but with seepage down to the heart.

Hi Marc
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Old 12-26-2009, 10:54 PM #23
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Quote:
Originally Posted by Lady View Post
Blockages are not good to have for anyone. Especially total blockage of more than one of five (two internal and two external jugulars and one Azygos in the chest, with back flow). Some have small kinks, but with seepage down to the heart.
Exactly! Even if I didn't have MS I'd want the plumbing fixed!

What's crazy is my entire workplace pretty much now knows the term CCSVI (I'm not even kidding.. it's common place terminology it seems in Canada now haha!). I think everyone here for the most part knows a PWMS who could potentially benefit, so it's definitely hit home for many.

What's not entirely surprising either are the folks who have MS-type symptoms here who are now going the CCSVI checkpoint route. Long-term migraine sufferers are another group who's been keenly interested in my circles. It would make sense (migraines/headache etc) if the flow in the head isn't correct, at least in my thinking and theirs as well.
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 12-27-2009, 02:36 AM #24
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Lady, that's great that your neurologist is supportive of this. You may have seen my post a few weeks bac about getting tested and the results showed 95% blockage in both my lower jugular veins. Like dmplaura I'm thinking I might want to get the pipes fixed. My DH likes the idea because it is concrete and biomechanical. He likes working on cars so the idea of fixing clogged/backed up hoses makes MS a little more concrete....I had to laugh. Even if it does nothing to my MS I still think it can't be healthy to have this problem and could very well cause other problems (headaches is definitely one...also cog fog because the de-oxgenated blood isn't getting out of the brain very well).

It sounds like it is getting LOTS of attention in Canada...not as much in the US. We should know a lot more soon (1-2 years) as opposed to a new drug (taking 10 years from start to finish).
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