And thank you for your quick response! I think being proactive with this disease is the only way to go. I just spoke with the nurse from my Neuro's office and she's sending me the script for an MRV. Should I just send the results to Dr. Dake, or should I have my doc review them (possibly as well)?
The doctors doing the MRV need to know what areas to look at. The dye needs to descend from the top of the head thru the IJVs. It's a bit of an art. A phone consultation w/Dr. Dake prior to the testing might be a good idea.
Would you suggest even seeing Dr. Coyle if she was just a moderator? I thought perhaps she would have insight from the conference that would help guide me. But, her office isn't exactly down the street... it would be at least a 6 hour round trip (not accounting for traffic) there and back, and it would end up being a day trip. Not that I mind; because I would pack my car and drive to Cali if it came down to it!
I don't know the answer to this one, Jen. Dr. Coyle kept her opinions to herself. Perhaps a phone consult before you go? Just to see if she is open to pursuing this line of investigation with you. I know she is well-versed in CCSVI. I do not know if she wants to pursue it with her own patients.
Anyway, am I correct in my assumption that all 109 MS patients involved in the initial study had this disorder, and were enrolled as a result? Or is it the other way around? Were they enrolled, with clinical diagnosed MS, then found to have CCSVI? It becomes a cart before the horse question I guess, and the answer may change my outlook!
Read all of the research Marie has compiled in the research sticky. You need to understand this for yourself. Of the 65 MS patients Dr. Zamboni tested- 100% had two or more venous issues and 100% had stenosis in the jugular and azygos veins. His team has since tested 500 MS patients, and all have CCSVI. Dr. Dake is seeing similar results, and Jacobs is, as well.
You are early in your disease course, and this research is not going away. Try not to be panicked, or feel you need all the answers right now. Read as much as you can, write down your questions, talk to the doctors. You will not miss out if you are not treated right now...if anything, there will be more research and understanding. Live a heart/vein healthy life, exercise, eat well, reduce stress and keep posting here. Welcome, Jen!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS