This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Saint what is the cost of this new IVUS imaging machine?

I accidentally posted this on the main forum, when I had intended it to go to you! I think I figured this out now....







I have a condition POTS (postural orthostatic tachycardia syndrome). It began 6 years ago. Anyway, not long later I developed severe heat intolerance and, due to that, ended up reading here on the MS board. I soon found out I have alot of common symptoms to MS people (and Chiari people), and began reading about CCSVI. I saw where many people who had heat intolerance before the procedure could then handle heat right afterwards. After MRIs, I didn't have any brain lesions, but I was found to have cervical stenosis at C3-C5. Way long before POTS, I began with tinnitus, facial nerve pain, etc. Because severe heat intolerance is my worst POTS symptom(yes, even more than being lightheaded with standing!), I have wondered if there could be some similar causalities(?) between my condition and MSers.

My question is, could degenerative changes in the cervical vertebrae, as in causing the neck to "shorten" due to collapses or exaggerated curvature, change the blood flow to and from the brain?

Last question (really!): Is there a baroreceptor in this process in the brain that might think there is too much vascular pressure, and would in turn, affect the renin-angiotensin-aldosterone system(or even ADH) to falsely lower the blood pressure and volume? In that sense, have CCSVI people had issues with altered blood pressure and/or fluid hormones? I know in my situation, I have both lowered ADH and aldosterone/renin, but don't have a reason why. So, I was wondering if that is something that was routinely measured or looked at in MSers due to the blood flow issues in the brain. Thanks!

Thank you so much!

On one of Jean Beale's threads at CCSVI in MS on FB we were discussing the outcome from Kuwaits study and at the same time I had been discussing David Wheldon's findings ( http://www.davidwheldon.co.uk/ms-treatment1.html ) with his wife's MS with Paul Thibault a researcher, Phlebonist and Dr in Sydney Australia.
The communication I had with Paul was about the viral effects (or BBB crossing effects) and what effect that will have on PTA outcomes and MS outcomes from PTA, which IMO are two totally different things when you must consider that there are two parts to the CCSVI involvement in any of these many disease outcomes caused by CCSVI.
From my FB site
"CCSVI in New Zealand
A quote from Paul Thibault about the outcomes in PTA and breach of the BBB during a recent conversation where coincidentally we identified that a virus 'CPn' is chronically active in my system and may be the cause of my MS and CCSVI symptoms;
"Regarding your thought above. The CPn intracellular bacteria affects both the lining of the veins and from there spreads to the surrounding nervous tissue. This is the reason why the MS lesions are predominantly around the veins as shown by a number of pathologists explaining the peculiar distribution of MS lesions. Whilst Schelling attributes this to mechanical effects of "back-jets", I favour an infective causation spreading along the veins to involve the neural tissue, as I believe epidemiological evidence favours this pathogenic mechanism. Schelling rightly criticizied the concept of infection, but he assumed that infection would spread from the arterial side of the circulation which it does in general with viral (eg EB virus) infections. But gram -ve intracellular pathogens such as Cpn (and spirochetes (Lyme) to a lesser extent) can spread by the lymphatic system and veins. I also check for Chlamydophila trachomatis as I suspect this may be involved in a smaller subset.
Cpn is widespread throughout society as a common respiratory infection and most people will come into contact with it at some time. Why only a very small proportion develop MS is unknown, but may be related to Vitamin D levels at the time of initial infection and other unknown factors. Kurtzke predicted this with his extensive epidemiological studies and he favoured the idea that it was mainly one infective agent, rather than a larger number.
The reliability of the NAC test is yet to be determined and I am accepting David Wheldon's opinion on this. It would certainly make an interesting study. The article I would recommend you to read is:
Kurtzke JF. Epidemiologic evidence for multiple sclerosis
as an infection. Clin Microbiol Rev 1993;6:382–427
The endothelium of the venous wall is part of the BBB. Any infection of this layer is going to affect the integrity of the BBB"

So in my opinion the outcomes from PTA need to be looked at thoughtfully. If a bacteria has crossed the BBB then it will require identification and treatment before the real outcome of PTA can be seen as an individual part of a process of correcting the whole effect of CCSVI and BBB leakage. Nigel Wadham

NZer1 please excuse my ignorance but I'm no Dr. Your post about viral infection reminded me of my first exacerbation back in 93. That was when I looked up MS and found a paper written by some researcher at the university of Saskatchewan here in Canada. There they had found an abundance of bacteria in MS patients, like an infection. They treated it with very strong antibiotics and supplements of grape seed extract to boost the BBB ability to hold back this bacteria. The paper further went on to state that after the commencement of treatment, patients had to be monitored for the "helix syndrome" because of the increase in proteins from the dying bacteria.

As I read my own post here I would think that this guy doesn't have a clue what he's talking about. I probably don't but your post just reminded me of that along time ago.

i ain't not saint. ask anyone you meet in NYC

i do not know the cost. I am hoping that they will do a trade, given as I am doing most of the research on this topic in the USA

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

i am not enamored with an infectious cause of venous abnormalities. IT does not make sense to me. The vein wall shows no signs of inflammations

but i am not a pathologist and would like to read some research on the topic before weighing in too heavily

s

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Sal there is some info on the Wheldon site and, and, he is not saying that it is 'THE' cause of MS. He is however saying that some examples benefit from this approach.
The bottom line on the bacteria issue imo is not that the vein walls are infected and causing the breach, the pumping/refluxing of CCSVI at the capillary beds is getting a bacteria across which then causes the symptoms in the infected CNS and remains after PTA treatment and still causes symptoms in those infected, not the entire MS population, maybe 30% is being found.
The bacteria damage to the vein walls 'may' only be a possible reason in 'some' virus cases, for some restenosis examples after PTA in areas where there is no valve or malformation present and the stretch of PTA on a stenosed vein is exposing the healthy wall to a bacteria, causing inflammation, and so on. Again this is a work in progress to present the supporting evidence and do the publications.

There are many things that are having an effect, as you are finding, there will likely be 10 or more ways that CCSVI evolves into the symptom group MS, and other Diseases. Such as Dr Flanagan's work! MRI studies of CSF flows and so on.
All I am saying is that there is merit in this approach and in addition Paul Thibault is working on the paper (his second) regarding his results that is due soon.
The number of PwMS and other diseases with a bacteria issue, CCSVI and needing PTA was about 30% from memory which ironically fits near some PTA nonresponder (or restenosis) outcome figures, long shot, hell yeah!
And Paul's paper will support the bacteria findings.

Finding that I am viral is prompting me to travel to Australia and see about a Zamboni Doppler (nearest place with a Zamboni trained person) and then treat the infection before coming to NYC and check your reputation!

Regards Nigel

What if we ask those we meet in Toronto, Ontario, Minneapolis, Greece...?
Might get a more saintly answer. Or at least a heroic one.

Dr. Sclafani has an ISNVD interview here: http://www.isnvd.org/index.php?site=interviews#content

this video is no longer available. Is there something wrong?

Dr S is a Greek hero since 2010, very well known to all greek ms fora (or forums)!

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getafix

the encouragement is much appreciated but i think you should just ask me questions.
some of this has got to turn off lots of the audience

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

it is hard for some to see you as "just another doctor doing his job".

ok, i have a question
what are the conditions that you think it's possible to provoke a relapse?
could be some kind of threshold, some flow change in time?

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getafix

Greeks are really odd people

Pelopidas
that is way over my head. I have no idea about that.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

I would get an exacerbation when I was under great emotional or physical stress. It is a catch 22 for me, the stress would bring on the exacerbation then that would manifest the stress. Now I have deal the chicken or the egg, what would be easier to deal with?