mshusband wrote:OK, I know a lot of you are much more experienced with MS than I am - again I'm completely new to it - my wife hasn't even started her interferon drugs yet.
But HOW do I get to one of these CCSVI guys? I'm willing to travel and pay for it if I have to ... I just want so badly for us to explore every treatment possible, because much like you, I don't believe the MS Societies, drug companies, and most Neurologists want to believe this could be fixed by someone outside their little circle.
Like I said, my wife is just barely even diagnosed, but why wait? Let's fight back now ... so who do I contact, how do I contact them, where do I need to go.
It seems like this has really (CCSVI) only blown up since October/November ... so how is it so many people on here have had it done or have appointments already? Would you all do it again (for those who have)? Did you pay out of pocket, or insurance or what? I've already contacted our local hospital interventional radiology department to find out if this is even possible here (Pittsburgh, PA USA).
Let me know please. I feel so helpless ...
mshusband wrote:In fact, we asked our Neuro about Dr. Burt's stem-cell study at Northwestern and he hadn't even heard about it ... that surprised me. Nor had any of the MSers in Pittsburgh I've asked. I don't get that, if that has helped others why isn't that out there?
And now with CCSVI - I've asked a few and they've responded like I have 3 heads or something ...
mshusband wrote:CCSVI hasn't even had a trial yet. It's sort of a frenzy.
mshusband wrote:Yes, one of Dr. Burt's study risks is death ... BUT that's a risk with all chemo. From what I've read the risk (of death) is less than 1%.
To compare, if you told me I had a 99% chance of winning the lottery - but required that I put $1,000,000 down first and said I could win 100 times that much 99% of the time, and the risk is to lose that much 1% of the time ... you'd have a million dollars in front of you before you were done talking. Odds are odds, and 99+% is pretty good, and in my mind worth the risk.
Now as far as your statement about it only being a phase II trial ... CCSVI hasn't even had a trial yet. It's sort of a frenzy. Does it show hope? ABSOLUTELY! I think it's great that it's a different way to view MS, what causes it, and how to treat it! I think (if you asked me honestly) it's a great new approach, and completely makes sense to me that this could be what causes MS - and if you can treat it before the disease progresses, you could technically stop MS.
mshusband wrote:JR. I don't know much about this site to PM or anything like that, but it's good to hear from someone near Pittsburgh..
Who is your Neuro?.
Who are you trying to get ahold of in regards to IRs in Pittsburgh?.
Yeah, I think clinical trials are going to be our best bet.. clinicaltrials.gov is where I keep an eye out.. But I'm sure we'll hear something the minute it breaks. They'll get hammered with folks like us trying to get treatment..I saw about the Georgetown study, and I want to get ahold of that Dr. ASAP..
I didn't fair very well with the interferons... quite frankly I hated them. I'm currently on Tysabri, and running out of alternative options at the moment. I'm quite sure my neuro. can't stand me as I have a mind of my own as well..My experience so far, in talking to the few people I know with MS around Pittsburgh is they are happy taking their interferons and listening to their Neuros. I am not that way ... nor is my wife..
In fact, we asked our Neuro about Dr. Burt's stem-cell study at Northwestern and he hadn't even heard about it ... that surprised me. Nor had any of the MSers in Pittsburgh I've asked. I don't get that, if that has helped others why isn't that out there? And now with CCSVI - I've asked a few and they've responded like I have 3 heads or something ....
Please keep me up to date on anything you find ... just hearing from you and that you're already on this in Pittsburgh has eased my mind a bit today.
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