Been chewing on this thread in my head since it was posted and have a couple of questions and a couple of observations.
1) Was the Aqygos vein looked at in either of your exams?
2) Did either of the doctors give you details on the more mild upper stenosis as to how occluded it was or what the implications were?
1) Like Joan, I wonder if that upper stenosis is congenital in nature, and I wonder if that particular area could cause problems downstream. What doesn't make sense is that the upper stenosis was only on 1 side, yet BOTH of your lower jugulars were occluded in the MRV. This kinda make me wonder if they are unrelated.
2) Without going back to reference the exact posts, I seem to remember at least a couple of people on here who tested positive (or Negative) at one point to only show the opposite in another test. Everyone has been quick to blame operator/machine error; however, perhaps its just the way it is. I wouldn't be surprised if its found out that some individuals (and I would guess mainly those less progressed) veins may be opening and closing. Its a very fitting piece of the puzzle if thats the case and would give reason to those who experience attacks and then remit.
OK, so lets speculate that this is going to be a common finding, that the veins do in fact open and close. Do you think that is normal behavior (the reason control groups in buffalo showed signs of CCSVI?)? Does it turn into MS when the body stops being able to 'open' up the veins on their own or when other environmental factors make it impossible for them to open on their own (for example, enough iron accumulation over time causing inflammation that prevents the veins from staying open?).
Personally I keep coming back to the Oligodendrocytes in MS and think there is a clue there somewhere that hasn't been put together. If its the death of the Oligodendrocytes that are in fact the source of immune response (as has been theorized), then could this triggered immune response be damaging the blood brain barrier, which could in turn cause periods of inflammation in the jugular region?
This could also play into the diet theory, take a look at this article on Aspertame:
Could it be that CCSVI truly is the driver behind MS progression, but that CCSVI is only 'treated' with Stents and Angioplasty, while the cause of CCSVI actually lies within the immune response triggered by the death of oligodendrocytes?
This definitely gets one thinking....thanks for the post Prof!
EDIT: Is it possible that the upper stenosis (that may be congenital) be the root cause of oligodendrocyte issues, thereby in essence being the root of it all?
EDIT EDIT: Iron accumulation could be substituted for Oligodendrocytes in this discussion. If the more mild upper stenosis is causing slow build up of iron, could that be the trigger of the immune response or inflammation causing the jugulars to open and close. I wonder if an SWI would show more iron accumulation around the area of the upper stenosis that was found in both the MRV and Ultrasound.
EDIT EDIT EDIT: Could it be that a congenital malformity such as a mild stenosis of the upper jugular area could be ground zero in regards to endothelial cell damage causing issues with the BBB that deteriorate over time? When the initial damage is done to the BBB is that perhaps when a virus gets in and starts doing damage to the oligodendrocytes that in turn snowballs the damage with combined with the already existing BBB problem?
So many questions still, but I think we're on the right path finally.