This Is MS Multiple Sclerosis Community: Knowledge & Support

so we have hubbard at 99 out of 100. dake at 20/24 and haake is at 49 out of 50 for finding ccsvi. Still its not just finding the ccsvi but fixing it. Is Hubbard using stents?

The fact that Hubbard and dake chared big money for their work gives them added credibility in some eyes I can't support the idea of charging a lot for an unproven theory.

I got flack for saying that six months ago, and some people still bring it up all the time. But heck, even Zamboni himself is saying this...

It is: finding all the CCSVI (challenging)
fixing all the CCSVI (challenging)
follow-up care so it stays fixed (challenging, esp with travelling for treatment)

When you choose your doctor, you choose your treatment. Sad but true. I think the list of questions to investigate on the doc you're considering should look at how he or she does on the finding, fixing, and follow-up care.

Great news about the Hubbards' patients not showing progression. But it has only been a short time (since August?), would progression be expected that fast?

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It was enough time to show progression in the 1 that re-stenosed was it not?

I'm sure you can't argue it was for EVERYONE ... but in the one case, it was enough time.

Not published (yet) but further validation that there is something to this whole CCSVI thing (as anyone who has personal experience with it, will be able to tell you) ... and that Zamboni's results are replicatable.

So now the spin will start on other parts of it (like why patients have to pay out of pocket for it instead) as we've already seen.

I have personal experience, I went to poland and got angio. I see no major improvements. I opted for no stent so maybe thats it. now trying to save up money and resolve for another try. Not quite convinced though...

Unlike america where a diagnosis of ms is something like cancer, I know several people who have ms and hold jobs and live normal lives. So if this disease isn't that bad I need proof to take risks to fix it...

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Thanks, Lyon, it's nice to be in agreement at times.

With Dr. Hubbard's patients, if they're all in the registry, we'll get the data on them as time goes by. Dr. Zamboni laid the foundation but I am ready to see this fully built.

Progression is difficult to measure in the short term, it's why all the focus on lesions.

ya dont know what I was thinking. I guess it's the deep south where I hear about ms patients getting chemotherapy and bone marrow transplants..stuff that's way too invasive for most ms outcomes.