rettahb wrote:I've been contacted by the Buffalo study. Do you think it will it be beneficial for me to participate? One thing the contract says is "I understand that the only benefit I will receive from these Tests is the knowledge that I present (or do not present) CCSVI." and then,"Thus, any information you gain from these Tests is purely informational and educational and will not be able to be used by you or any other person to diagnose, cure,treat, mitigate, or prevent your MS." And I don't see any mention of "Venography" the "gold standard." Is it worth the $4500? I am on Dr. Scliafani's wating list and more then anything hope that his study will come through as well. Any input would be appreciated. thx.~r
Are you guaranteed treatment? If it was me, I wouldn't commit to a study where, if they find the stenosis, they may, or may not perform the procedure.
Maybe that's easy for me to say because I don't have MS. I'm here looking for help for my darling man who was diagnosed with primary progessive in 2007. I want him tested and treated NOW. I don't want him to be part of a study. He doesn't have time to wait. His condition is deteriorating rapidly. He's only 58-years-old.
I pray that this is all sorted out quickly. I pray for doctors, like Dr. Sclafani, who believe in the research that's already been done, and who want to proceed, with caution, to help patients who don't have the luxury of time.
I also pray for everyone who gets involved with clinical trials.