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This is just food for thought. I think most of the evidence from the researchers agree that these venous malformations are congenital ( you are born with them) so every MS patient had these BEFORE they had MS.

Before they had symptoms, and a diagnosis. I think before the iron build up and subsequent oxidation and inflammation got to a critical level disrupting the normal brain function.

All of these people...... where once considered "normal".

So the normal control group with CCSVI may be predisposed to development of increased brain iron in high levels and a hypoxemia (low Oxygen in the brain blood) to a level that causes impairment.

Because people of all age ranges develop MS and the venous lesions vary in the amount of reflux they cause......it might be that those with the venous malformations but no MS have not gotten to that tipping point.

As for the immune system, since this is a chronic congenital malformation, the reflux and its subsequent sequalae ( injury caused by) have been going on for a long time.........the immune system is designed to "fix", " and "clean up" "repair" damage and remove debris, toxins, poisons, any foreign invader. Its made to function well with the aid of oxygenated blood and cells. In CCSVI the immune system is overworked and working in bad conditions. Nerve cells like all cells like a healthy dose of oxygen and glucose to function.

I believe ( and this is just me thinking on overload) that once you get the reflux problem corrected and the oxygenation restored normal healing will be the mission of most peoples immune system.

Macrophages will attempt to get rid of iron ( they may need help) and myelin will regenerate as long as the axon is not dead.

We can not think of all the immune system parts as destructive- thats old thinking- We need to think of building a healthy immune system by healthy eating ( including anti-oxidants), fresh air ( no smoking) and exercise to help the body to repair itself.

I have seen many cases of Guillian Barre a known demyelinating disease recover and remyelinate - so it can happen- but it takes time and good healthly living.

These are just my 2 cents!

Cat,

I'm so glad you have joined our community! I may not have caught all of your posts, but the ones I've read have been so thought-provoking and make so much sense.

Your daughter is very lucky to have you!

Nicole

Cat,

What do you think of remaining on the MS drugs after having the procedure for CCSVI?

lucky125 wrote:I'm so glad you have joined our community! I may not have caught all of your posts, but the ones I've read have been so thought-provoking and make so much sense.

Click on 'profile' and then 'read all posts by MegansMom' - I agree 100%, very well-thought-out posts!

Cece wrote:

lucky125 wrote:I'm so glad you have joined our community! I may not have caught all of your posts, but the ones I've read have been so thought-provoking and make so much sense.

Click on 'profile' and then 'read all posts by MegansMom' - I agree 100%, very well-thought-out posts!

Thank you both for the compliments.

The only study, as far as I am aware, that found CCSVI in healthy controls was the BNAC study, at almost 25%. This doesn't lead me to conclude that these individuals are MS cases waiting to happen or even that the background population has a high degree of venous malformations. Rather, it leads me to conclude that Doppler ultrasound is an unreliable device for detecting venous malformations.

I have my own example to go by. The Doppler ultrasound was normal for both IJV's (except for flutter more evident in the left) and completely missed what is plainly evident on the MRV images - a severe restriction of my right IJV. Reason - the Doppear technician didn't or couldn't image low enough on my right IJV.

Had I participated in the BNAC study, I would likely have been lumped with those MS patients who do not have venous malformations. My guess is that venous malformations of the congenital variety are rare, except in MS patients.

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Lyon wrote:I don't want to stir a bee's nest on a nice Sunday morning but with most everyone finally coming to the realization that the only test which can really be counted on with any accuracy is the venous catheter, which hasn't been used on controls because it is invasive, doesn't it really seem that we are effectively at ground zero regarding controls despite seeming results from earlier studies?

I have to agree with you Lyon. Research is all about trial and error and, unfortunately, I think a lot of these studies have to go back to the drawing board for study design flaws.

If the venous catheter is the gold standard detection method then any study that doesn't deploy it will be open to question at least until there is a study to correlate the accuracy of a Doppler or MRV to a venous catheter. Myself, I think they should look for obstructions and correlate that to MS and go from there. I happen to think that reflux might not be as apparent at all times with MS patients with occluded neck veins.

To add to my previous post, that's why I think a clinical trial of balloon angioplasty might be the best way to go. At least the sham part of it will be easy to fake if the control group is undergoing a venous catheter anyway. As for healthy controls, a catheter study would likely have poor enrolment. I think if they simply focus on venous malformations detected by MRV, the results will produce less error than attempting to define a CCSVI syndrom and then setting out trying to detect the inclusion criteria by Doppler.

Lyon, this was why Dr. Sclafani's statement early on that, in forty years of practice, he'd never seen the sort of CCSVI veins that he's seeing in MSers, carries some anecdotal weight with me.

When you say you don't want to stir a bee's nest, could you possibly be meaning the opposite? It is hard to tell in written communications sometimes.

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Thanks Megansmom, I am of the same opinion. Many of the causes of vein restrictions are yet to be identified, and I also agree with the point Cece reminds us of from the good Dr. S, regarding the malformations and MS link.
In many ways while we are trying to avoid invasive techniques we are limiting the knowledge. The inspection by catheter is not an issue only the dilation and success of dilation.
To progress the science of CCSVI and MS it will likely be necessary to inspect the study/trail groups by catheter/IVUS and determine the incidence of stenosis first and approach treatment as a separate issue.
All the delays so far from risk aversion by the Medical world has only delayed the education. The pushing by patients to have treatment has changed the process of researching and then assessing, and working on treatment methods which normally were out of the public eye. The push by patients to be treated has shortened the process that medical science historically would have taken.
We need to take bite sized action rather than to expect to have it all in one swift move. The cart has been in front of the horse for too long and has stalled the learning, yet made a few people happy that they have received hasty uneducated/experimental approaches to a treatment that is still an embryo. Yes the learning has been huge and scattered and uncoordinated and created enemies where we need allies.
Small steps big gains. Think before you leap.

Obviously my daughter would have been considered as a control before June ( when her symptoms started) She obviously had the same 2 stenoses back in June. That's merely my point.

Everyone diagnosed with MS and CCSVI had the malforamations prior to MS diagnosis and at that time may have been considered as a member of a "control group".

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