What has changed?

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

What has changed?

Postby NZer1 » Fri Jul 19, 2013 1:16 pm

What has changed?
20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in mainstream MS treatment and research. The connection to the vascular system is real for many, and is being dealt with in a "sideways" manner by neurologists. I do not expect we will hear that CCSVI is valid from neurology--they will attempt to rename it, requantify slowed venous return, and make it their own. And they will create drugs to modify it. link

But the facts remain:

1. People with MS have less cerebral blood flow than normal people. Their blood flow exits the brain at a slower rate. Researchers are looking at drug therapies to address this fact, but it is no longer an item of debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause or effect of MS will be debated for decades.
link

2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is thought this might be due to vitamin D levels, but it might also be due to how UV rays release nitric oxide and change the endothelium and blood flow.
link

3. People with MS are being advised to look into their nutrition and to eat more fruits, vegetables and whole foods and less animal fats and processed foods. When Dr. Swank suggested this 60 years ago, it was called "junk science." It is now given as helpful advice by the NMSS and the AAN. Same thing with exercise. Only a decade ago, pwMS were told to not exert themselves. Now we know that physical exercise and activity delays progression. Same thing with smoking cessation, stress reduction, and better sleep. All of these cardiovascular lifestyle changes can make a difference.
link

4. Oxidative stress and inflammation are recognized as driving forces in MS progression. This has lead to exploratons of new modalities of treatment, like the Nrf2 pathway.
link

5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.
link

6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than normals. These are markers of endothelial dysfunction.
link

7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to the heart is slowed and impeded in pwMS.
link

8. CCSVI is being explored around the globe. There are literally hundreds of papers published in vascular and neurological journals. New papers come to press every day. Not many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding CCSVI in pwMS.
link


All of this is new. And it has happened in just the past four years.

+++++++++++++++++++++++++++++

For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step back and view the other changes that have happened in MS care.

The American Academy of Neurologists has several papers featured on their page which connect slowed blood flow and neurodegenerative disease. They have a patient outreach branch--The American Brain Foundation-- and they have a yearly Brain Fair to discuss diet and lifestyle changes people with neurodegenerative diseases, including MS, should consider. So much for Dr. Swank's junk science.

But most importantly, all of our lives have changed. For those who did not receive lasting benefit from venoplasty to address CCSVI--many have moved on to look at other therapies and modalities for treatment of their disease. For those who have done well with this vascular approach, life has gone on.

I'm in that fortunate position now. Jeff is doing quite well-- he is working, up and active, with no further MS progression. His gray matter atrophy is gone. Our son is off to college, and we find ourselves in a new phase of life. I've curtailed my online and advocacy time to rediscover my career, my other pursuits, friendships, travel, and to be present in my own life.

When reporters, scientists, neurologists, MS specialists and others say--"Oh, the connection of CCSVI to MS, that's simply junk science"---tell them about Dr. Roy Swank. Remember how long it took his observations of "capillary fragility", slowed blood flow, and hypercoagulation to be accepted as part of MS. He was noting endothelial dysfunction decades before scientists knew about nitric oxide and how environmental factors contributed to blood flow. And he has never once been credited by mainstream neurology. You won't see his name or read his research in their journals. But he was right.

++++++++++++++++++++++++++++++

Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS is making these very same dietary and lifestyle recomendations to pwMS.
https://www.youtube.com/watch?feature=p ... Enn_AZT-SU


Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood flow, by studying the under-researched extracranial venous system. He is decades ahead of his time. His discovery of CCSVI may be the other part of the equation on slowed venous return and endothelial dysfunction in pwMS. To say that it is junk science, and that there is no connection in venous return in MS, is to negate scientific fact.

Joan

https://www.facebook.com/notes/ccsvi-in ... =notify_me
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Re: What has changed?

Postby erinc14 » Sat Jul 20, 2013 7:52 am

thanks !
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Re: What has changed?

Postby LR1234 » Tue Jul 23, 2013 2:05 pm

Thanks for the cool summary, helpful :) x
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Re: What has changed?

Postby MrSuccess » Tue Jul 23, 2013 11:27 pm

CCSVI interest has grown immensely. There have been , and will continue to be -periods of quiet growth. The initial period of discovery was exciting . We waited with great interest to read of the CCSVI conferences , and who attended.

We now have LOTS of case studies to be explored and debated.

Let us not confuse the current " quietness" .... with lack of interest.

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Re: What has changed?

Postby vesta » Wed Jul 24, 2013 4:25 am

Thanks for the great summary. Who is Joan, how can I follow her reports over these past 4 years? Probably she is well known to those who have been following this thread, but I am "relatively" new. Would love to know who had MS (Jeff?) and what was done? Thanks again.
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Re: What has changed?

Postby cheerleader » Wed Jul 24, 2013 3:10 pm

Just saw Nigel posted this note....the links aren't working in his post, but if you're on Facebook, you can get all of the links to peer-reviewed research, which helps further explain each item. https://www.facebook.com/notes/ccsvi-in ... 6965447211

Vesta, it's me--cheerleader/Joan. Jeff's my husband, he's four years past venoplasty at Stanford (he was the first American treated for CCSVI in the states). He's still doing really well with no MS progression, no relapses and a reversal of gray matter atrophy. We went mountain biking yesterday, and I still can't keep up with him. I started the first CCSVI thread on here back in 2008, been a TIMS member since 2007 when Jeff got diagnosed with MS. Always interested in the vascular connection, since Jeff's blood numbers were very strange at his diagnosis--I looked into endothelial health. But his blood numbers are great now, and he's still eating well, moving, staying postive, getting his UV rays- living a cardiovascularly healthy life. Here's the program I put together to help him. http://www.ccsvi.org/index.php/helping- ... ial-health
take care!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: What has changed?

Postby vesta » Tue Jul 30, 2013 2:03 am

Thanks cheerleader:
I very stupidly failed to note your info pertaining to your husbands CCSVI treatment with stents on my now deleted post. I will check out your posts for April - May 2009 to see what happened. Do you think that by improving endothelial health he avoided complications? Very helpful information all around.
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Re: What has changed?

Postby CuriousRobot » Tue Jul 30, 2013 10:42 am

Can you post a link to #5? I am interested in reading the peer-reviewed work.
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Re: What has changed?

Postby orion98665 » Tue Jul 30, 2013 11:38 am

CuriousRobot wrote:Can you post a link to #5? I am interested in reading the peer-reviewed work.



http://journals.lww.com/neurotodayonlin ... __A.2.aspx
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Re: What has changed?

Postby NZer1 » Tue Jul 30, 2013 1:06 pm

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Re: What has changed?

Postby cheerleader » Tue Jul 30, 2013 6:12 pm

CuriousRobot wrote:Can you post a link to #5? I am interested in reading the peer-reviewed work.


Hi CR--there were several links included in the Facebook note I wrote. Because I use hyperlinks on Facebook, it's a bit of a chore---but for you :)

This is a brand new paper-
As is clear from pathologic studies and neuroimaging, gray matter pathology is of critical importance in multiple sclerosis.
Gray matter demyelination (both focal and diffuse) and gray matter atrophy are found in the very earliest stages of multiple sclerosis and are progressive over time. Accumulation of gray matter damage has substantial impact on the lives of multiple sclerosis patients; a growing body of the literature demonstrates correlations between gray matter pathology and various measures of both clinical disability and cognitive impairment.

http://www.hindawi.com/journals/msi/2013/627870
These contemporary methods have fundamentally altered our understanding of the pathophysiologic nature of MS.

http://www.ncbi.nlm.nih.gov/pubmed/23296131

"Initially, multiple sclerosis was considered primary a white-matter disease," says Weinstock-Guttman, "but today we know that the gray matter may be more affected than white matter."

http://www.medicalnewstoday.com/articles/178458.php

Here is a study that looked at white and gray matter damage in MS autopsy brains, and found no correlation between the two. This is important, because some neurologists claim that the white matter disease comes first, and leads to gray matter loss. This study says the two are independent of each other--

http://archneur.ama-assn.org/cgi/reprint/64/1/76.pdf

I'd also point you to the thread I started on this topic of gray matter--in the general forum general-discussion-f1/topic19418.html

It begins discussing this paper--Advances in understanding gray matter pathology in multiple sclerosis: Are we ready to redefine disease pathogenesis?

In the last 5 years, numerous cross-sectional and longitudinal studies established that GM damage is a better predictor of physical disability and cognitive impairment than WM damage. [5] Most studies examining this argument used novel imaging techniques that can indirectly assess the extent of GM damage, the most important being a measurement of GM atrophy. [2,5] Therefore, monitoring the evolution of GM damage by various imaging techniques is becoming an important marker in predicting the future disease course and response to therapy in MS patients. A number of current clinical trials examine the effects of immunomodulatory treatments on slowing down GM damage over time.

In conclusion, the review papers by Lucchinetti and Popescu, [4] Walker and colleagues, [3] Hulst and colleagues [2] and Horakova and colleagues [5] represent a comprehensive update on the role and significance of GM damage in MS. They also raise a number of important new questions and outline comprehensive approaches to address those questions in years to come.

http://www.biomedcentral.com/content/pd ... 7-12-9.pdf


hth,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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