This morning I came across a post at This is MS that discusses a presentation made by Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland to a conference in Bologna, Italy. I wish I had seen this before as it completely changes my perspective on my diseases.
Dr. Gabbiani took five specimens from internal jugular vein tissue removed by Dr. Zamboni from patients he treated endovascularly from areas not damaged by angioplasty and compared them against healthy control tissue. His finding: MS patients had significantly more smooth muscle cells than the non-MS controls. He found that there are less Collagen I type fibers and more Collagen III type fibers in MS patients. It is thought that the connective tissue in MS patients switches from collagen I to collagen III. Apparently it’s known to happen in the arteries, but finding this in the veins is a new discovery. This could be a critical finding for CCSVI!
During the EDS diagnosis process, I learned that one of the major concerns that needs monitoring is cardiovascular health. I’ve had an EEG for a baseline and so has my daughter. I was told to get her EEG done every three years and annually during times of rapid growth (puberty.) I thought of this in passing when I first heard of CCSVI and when I found out that my jugular veins are constricted. Somehow the link didn’t set in until I read about Dr. Gabbiani’s findings.
It makes complete sense that my vein problem could be related to my other connective tissues issues. How amazing would it be to find out that my MS is even more related to my connective tissues disorder than to an auto-immune disease? I think there is a ton of research that needs to happen in this area, although I’m skeptical it will ever get funded. I’m on a mission to find a doctor who knows about EDS and vascular surgery. Since EDS already has a known vascular connection, I think this will be a much better avenue for me to pursue than talking with neurologists, who are obviously dead-set against discussing CCSVI with me. I’ll let you know if I have any luck!