Cece wrote:I don't know about this...I think the drugs have their place, that CCSVI starts off the problem but that once the blood brain barrier is breached, there is some autoimmunity involved, as Zamboni theorized. But I have always gotten by with Copaxone, these last four years, which has fewer side effects. I will stay on it post treatment too.
magoo wrote:Congratulations Don!!!!! I can relate to your happiness, it's wonderful right? I hope you continue to improve. Good job going local and advocating for yourself. I hope we continue to hear more stories like yours.
mshusband wrote:Donn ... did you mention that to the IR? (that the veins could re-stenos)
I would imagine they would be willing to do this a 2nd time if they did it a first.
Also are you guys following up with these IRs on a regular basis to re-look at this?
Donnchadh wrote:My main concern now is that if my jugular veins relapse and the initial progress is reversed. Dr. Zamboni's research showed that about half did after 18 months; maybe I will be one of the lucky ones.
newlywed4ever wrote:Donnchadh - just a quick THANK YOU! Since I also have PPMS, your thread is one of the first I read. I am sincerely happy for you. I have started my letter writing to IRs in Chicago (I am in Michigan's U.P.). Sending positive energy your way for continued improvement...
BooBear wrote:Do you mean Northern Illinois University?? Would you mind sending me a message on which IR you saw that performed the CCSVI for you?
I am in the Chicago suburbs, but am treated out of the OSF Medical Center/Illinois Neurological Institute in Peoria. I have inquired there about CCSVI, but my neuro wants to hold off until more is known.
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