Coach, I thought about you since yesterday and had a crazy idea. I hope you don't mind my digressing a bit...
When reading Zamboni's papers and seeing how his CCSVI diagnosis was uniformly present in more than 60 patients with MS, and how the correlation was absent in over an even larger number of healthy controls as well as other neurological diseases, I actually was a bit surprised given that MS is not a straightforward diagnosis. I've read several accounts of people who after years of living with an MS diagnosis, found out that they had something else, the most prominent example being Lyme's (which apparently often goes undetected with the standard tests). I believe many had lesions on MRI, and positive spinal tabs. I'm guessing one typical MS symptom of stenosis would be fatigue, since there's chronic lack of blood supply to the brain. Many of the other symptoms that stem from more discrete areas can be caused, in principle, by parasites and the immune system's response to them.
I think many of us have come to think that measurable stenosis is more than a mere correlation with MS, but a necessary pre-condition. Your case either argues against this, or you have been living with a wrong diagnosis.
Another possibility is that the methods for diagnosing CCSVI are different enough in Zamboni and in Dake, and that you would have fulfilled two of the five Zamboni criteria for CCSVI. Perhaps somebody else will know if this is at all a possibility? Since Zamboni treated his patients in specific locations, presumably he had also seen stenoses in each.
Finally there's the option that CCSVI is not a necessary pre-condition for MS, but only a very strong predictor, and that you just happen to be somebody where "the other component" (whatever that may be, Lyme's? Chlamydia Pneumoniae?) plays a very strong role and the stenosis isn't necessary for starting MS. An interesting point is that antibiotics work in many patients at keeping MS at bay, despite their congenital stenosis. Even given an infection my thinking until yesterday had been that stenoses are necessary to lead to the cascade of events (iron deposition, hypoxia, inflammation) in MS, but now this is not clear anymore...unless…you have been misdiagnosed.
I'm sorry if I'm adding more confusion than clarity, but felt like letting you know what I've had on my mind. Btw, my MRI showed that I have a venous angioma, apparently not large enough to be worrisome.
Last edited by radeck
on Tue Sep 22, 2009 8:45 am, edited 2 times in total.