Rocky Mountain MS Center soliciting responses

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

Rocky Mountain MS Center soliciting responses

Postby notadoc » Mon Nov 15, 2010 5:56 am

Published in the Nov 14 Denver Post and on their web page is a request to participate in a survey about how they can better serve us. If you are in the Rocky Mountain region, or perhaps even if you are not, please tell them what you think at http://www.mscenter.org.
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Re: Rocky Mountain MS Center soliciting responses

Postby cheerleader » Mon Nov 15, 2010 10:30 am

notadoc wrote:Published in the Nov 14 Denver Post and on their web page is a request to participate in a survey about how they can better serve us. If you are in the Rocky Mountain region, or perhaps even if you are not, please tell them what you think at http://www.mscenter.org.


I don't have MS or live in the area---but I might suggest that someone ask them if they are participating in the Altitude Research Center's study on hypoxia and multiple sclerosis---

The Altitude Research Center (ARC) at the University of Colorado School of Medicine at the Anschutz Medical Campus brings scientists and doctors together to study the complex medical and physiological challenges of hypoxia on human health and performance. The facility boasts state-of-the-art laboratory facilities, sophisticated instrumentation and computing resources, and a 10'-by-28' hypobaric chamber that can simulate altitudes up to and beyond the summit of Mt. Everest.

According to ARC director Ben Honigman, M.D., the center has two main focuses. First is the study of integrative physiology, how hypoxia affects the whole person as well as at cellular and molecular levels. This includes the search for a prevention and cure for AMS — which could have implications both economic and military. Investigators are also identifying specific genes that can predict who will get sick and studying the responses of individuals who exercise vigorously in hypoxic environments to better understand physiology at altitude and minimize the risk of deadly edema.

The other focus is epidemiology, the effects of hypoxia on lifespan and progression of cancer, heart disease, obesity, lung diseases, and neurological diseases, including Alzheimer’s and multiple sclerosis. Projected studies will investigate multiple sclerosis progression, longevity, cardiovascular disease, and behavior of malaria at altitude. Medical applications for these studies are being realized in conjunction with sophisticated geographic information systems technology that tracks migrations of populations.

http://www.denvermagazine.com/May-2010/ ... -Altitude/

I believe it is of the utmost importance that MS Centers in Colorado participate and acknowledge these studies in light of the discovery of CCSVI and ongoing research into hypoxic injury in the MS brain. Especially for pwMS who live or travel to high altitudes.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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oxygen and lack there of

Postby jak7ham9 » Mon Nov 15, 2010 10:56 am

Hi cheerleader yes I think experiment on lack of oxygen and high altitudes effect on ms are interesting I have a hyperbaric chamber which gives pure oxygen under increased pressure ( as in underwater low altitude) obviously it makes me feel much better and removes my cog fog issues).. i was operated on by Dr Sclafani and may have the operation again. I got angio felt some relief which dissipated quickly. As he still does not like stents I am wondering if I will get the sustained relief that the great portion of dakes patient and your husband got using stents. Truthfully I want to try again but I am wondering if it will stick with just angio. Barbara just getting weary and tired
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Postby civickiller » Mon Nov 15, 2010 9:32 pm

Are you wondering about living in high altitude? Or just going to high altitude for like a day?
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Postby cheerleader » Mon Nov 15, 2010 10:07 pm

civickiller wrote:Are you wondering about living in high altitude? Or just going to high altitude for like a day?


Both, civic--Colorado has high numbers of pwMS that are diagnosed after moving there. My husband's first MS flare came after being at high altitude for just a week. I believe in some (not all) pwMS---the already compromised low level of O2 due to venous insufficiency is harmed by high altitude, until the body can adjust. More research needs to be done on this. Fortunately, Dr. Haacke is now testing O2 levels and perfusion in MS brains before and after angioplasty, and that may shed some light.

GRAND JUNCTION, Colo. (KKCO) - Much about Multiple Sclerosis is still a mystery and some 400,000 people in the U.S. know first hand of the disease that cripples the body and affects the nervous system. What's just as puzzling, and perhaps startling, is that M.S. seems to target certain places.

"Colorado has a high prevalence, one of the higher rates in the country. There's about 9,500 people here that have told the Colorado chapter of the M.S. Society that they have M.S., and there's likely more," says Tricia Pallatt, community outreach manager for the Western Slope chapter of the National M.S. Society.

Sherene Clowers was diagnosed with M.S. at five years ago, at just 27-years-old. She says she has friends who moved to Colorado and were then stricken with the disease as well.

"I think it's very weird. I know of some people who were not born in Colorado that were diagnosed also," says Clowers.

http://www.nbc11news.com/localnews/head ... 20129.html
Of all places in the country, Colorado should be studying venous insufficiency, hypoxia and CCSVI
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ikulo » Tue Nov 16, 2010 1:39 am

cheerleader wrote:
Both, civic--Colorado has high numbers of pwMS that are diagnosed after moving there.


Cheer, do you have any studies on this?
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