Hi to all. I am diagnosed with SPMS since 2004....ON MY BIRTHDAY..oh happy day! Since then, I've enrolled in the "hyc" clinical trials at Stony Brook on LI ,NY. I am convinced that the disappearance of that terrible fatigue is do to that regimen. It was tough!!!. I think they calll it revimmune now but I didn't get the stem cell component [it wasn't part of the protocol then].
That aside, I am elated about the CCSVI theory now proposed. I as convinced there's something to this. Interestingly, my first symptoms were in my legs after varicose vein surgery, followed by a bout of Bells palsy {EBV!!!]and a previous bout of "Shingles" [Herpes Zoster], across my midriff .
I've registered to enroll in the U of B trials to test for venous malformations and am anxiously awaiting their response.I"ve also contacted the vascular surgeons and interventional radiologists in my area to find out if they're doing anything connected with this theory [no responses yet]. If not, I'm going to make some noise with my own GP and Neuro about getting tested on my own. We'll see....