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There is new info that takes MS out of the neurologists hands and believe that it is a vascular problem. I'm in agreement with the 2nd theory and think neurologist should butt out! I also believe that steroids will help keep muscles strong and working so that people don't deteriorate.

My current dr. doesn't want to help and won't prescribe them. That's fine, I'll just get them on the black market. Thanks again for the info.
 
There is new info that takes MS out of the neurologists hands and believe that it is a vascular problem. I'm in agreement with the 2nd theory and think neurologist should butt out! I also believe that steroids will help keep muscles strong and working so that people don't deteriorate.

My current dr. doesn't want to help and won't prescribe them. That's fine, I'll just get them on the black market. Thanks again for the info.


Multiple Sclerosis - Chronic Cerebrospinal Venous Insufficiency

Reekers JA, Lee MJ, Belli AM, Barkhof F. Cardiovascular and Interventional Radiological Society of Europe commentary on the treatment of chronic cerebrospinal venous insufficiency. Cardiovasc Intervent Radiol 2011;34(1):1-2. Cardiovascular and Interventional Radiological Soc... [Cardiovasc Intervent Radiol. 2011] - PubMed result / http://www.springerlink.com/content/964x66410756v0t4/fulltext.pdf

Chronic cerebrospinal venous insufficiency (CCSVI) is a putative new theory that has been suggested by some to have a direct causative relation with the symptomatology associated with multiple sclerosis (MS) [1]. The core foundation of this theory is that there is abnormal venous drainage from the brain due to outflow obstruction in the draining jugular vein and/or azygos veins. This abnormal venous drainage, which is characterised by special ultrasound criteria, called the "venous hemodynamic insufficiency severity score" (VHISS), is said to cause intracerebral flow disturbance or outflow problems that lead to periventricular deposits [2].

In the CCSVI theory, these deposits have a great similarity to the iron deposits seen around the veins in the legs in patients with chronic deep vein thrombosis. Zamboni, who first described this new theory, has promoted balloon dilatation to treat the outflow problems, thereby curing CCSVI and by the same token alleviating MS complaints. However, this theory does not fit into the existing bulk of scientific data concerning the pathophysiology of MS.

In contrast, there is increasing worldwide acceptance of CCSVI and the associated balloon dilatation treatment, even though there is no supporting scientific evidence. Furthermore, most of the information we have comes from one source only. The treatment is called "liberation treatment," and the results of the treatment can be watched on YouTube. There are well-documented testimonies by MS patients who have gained improvement in their personal quality of life (QOL) after treatment. However, there are no data available from patients who underwent unsuccessful treatments with which to obtain a more balanced view. The current forum for the reporting of success in treating CCSVI and thus MS seems to be the Internet. At the CIRCE office and the MS Centre in Amsterdam, we receive approximately 10 to 20 inquiries a month about this treatment. In addition, many interventional radiologists, who are directly approached by MS patients, contact the Cardiovascular and Interventional Radiological Society of Europe (CIRSE) for advice. Worldwide, several centres are actively promoting and performing balloon dilatation, with or without stenting, for CCSVI.

Thus far, no trial data are available, and there is currently no randomized controlled trial (RCT) in progress Therefore, the basis for this new treatment rests on anecdotal evidence and successful testimonies by patients on the Internet. CIRSE believes that this is not a sound basis on which to offer a new treatment, which could have possible procedure-related complications, to an often desperate patient population.
 

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I've actually had the proceedure last November. I've had MS for almost 16 years so didn't expect dramatic results. Everything went well and now it is my turn to do the work. I entred physiotherapy and experienced improvements but they were minor. It's a vicious cycle that physio will give strength but need strength to do the physio. It's very expensive so I need an edge - the steroids will help me build the strength better as I do the physio, workout and swim.

I've heard the objections to CCSVI but I still think it's the right way to go. There is lots of info about it's safety but some fail to recognize it unfortunately aside from patient testimonials. Progress is good even at the expense of a few. I knew some people have experienced issues after the procedure but I weighed the benefits/risks and decided to get it done! I am very glad I did it and I wish my dr. would work with me so I could continue to heal.
 
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