Dear Steffi, this is also how I started and probably many of us did. I had the first phenomenon on 14 years of age, some effects later on but with many years in between of generally good health (did not even know about MS). The diagnosis MS came only at 48 years of age, now almost 6 years ago. The first 3 years after diagnosis, things went back considerably. Then, I started with Swank/Jelinek and have been able to sort of stabilise things (I am not religious on all this but make a good effort, I can advice you all, see www.takingcontrolofmultiplesclerosis.org
Last year I met with dr. Zamboni in Ferrara and he diagnosed me with CCSVI Pattern C (stenosis in both internal jugulars but still awaiting liberation). Zamboni has got a theory about this. My own interpretation of that goes a bit as follows: as the vascular system gets older, the veins become more rigid/less flexible, there is less compensation possible via the other veins, the refluxes get worse, the accumulation of deposits accelerates with increasing percolation into the BBB because of venous pressure and refluxes. With definitive MS as a consequence. Such course would make perfect sense to me.
When I had my tests done by dr. Zamboni, indeed he requested me to take a very deep breath and to hold it for some seconds. This fllows what was said here above by cheerleader: The flow direction in Dr. Zamboni's studies is measured in the respiratory pause between inspiration and expiration. This was done in both up-rigth and supine position. I saw the huge flux/reflux with my own eyes, in both internal jugulars and transmitted into the deep cerebral veins, very impressive. I am convinced that any doctor who has seen the procedure with his own eyes would be convinced.
It is with this procedure that Zamboni must have found the 100% positive correlation of CCSVI and MS (I have no doubt on this). The echo-Doppler, when used correctly, is such a very powerful instrument. As we know, Zaboni has been able to convince experts from 43 countries who decided -by unanimity!!- on CCSVI and its relation to MS. (see other thread)
In the meantime, an angio/phlebogram was made of my jugular veins in a local hospital. At first sight the outcome points to a quasi normal situation, except for one shaded area with clearly less contrast (>80% less) somewhere toward the beginning of the dominant left internal jugular which could imply a significant stenosis [I am not a doctor]. And the right jugular was clearly less than the left (less contrast as well). This makes that there is an interpretation possible that would reconcile the outcome of both diagnosis. That has to be the case as both tests were done by most renowned experts in their field with great professionalism and confidence.
What is said here for the angio/phlebography is probably also true for the MRV. Creating a valid combined picture from echo and angio/MRV is probably the real challenge for doctors. This is also how I understood the comments from Polish doctors (who do actual liberation) on the false results of (MRV based) investigations in Germany.
This shows a few things to me: the diagnosis of CCSVI is not so easy and requires the right skills and the right equipment. But then the echo-Doppler is a very very powerful instrument for diagnosis (Zamboni told me the same). The echo-Doppler is fast and non-incisive and a critical step in the diagnosis.
There is a lot of noise that shows up now with regard to diagnosis of CCSVI and the techniques to be used for it. Although I am not necessarily a fan of big conferences, some well prepared events on both sides of the Atlantic could help to keep the train on the right track.
For Steffi, I would be very interested to know what came out of your meeting in Ferrara.
Thanks a lot.