This Is MS Multiple Sclerosis Community: Knowledge & Support

I’ve stated this in other threads but I’ll repeat it here. I believe that all of the studies that are funded by the MS Societies are a waste of valuable time. While the question of the relationship between CCSVI and MS is interesting and does need to be studied, it is not relevant to the treatment of MS patients.

If the current studies find that CCSVI is found equally in MS patients and the general population, these findings will not change the fact that treating CCSVI has the potential to help tens of thousands of MS patients in dramatic ways that no existing pharmaceuticals can. How and why these treatments help needs to be studied. Thank God we now have a few of these treatment studies underway in the US.

Of course if the current studies of the relationship between CCSVI and MS do not show a strong correlation then certain groups will exclaim that no further study is needed. This conclusion has no basis in logic but it will be used aggressively by those who professionally oppose future research into CCSVI.

While I don’t know what the results of the current studies are showing, I do have serious reservations about the methodology. Using personal experience as an example, my wife had Doppler Ultrasound using the Zamboni protocol by very experianced profesonals in Albany. The results were negative for CCSVI. The following day she had the venogram and had stenosis in both jugglers corrected. This procedure has significantly improved her quality of life. If she was part of a study she would have been listed as not having CCSVI. I don’t know how common this situation is but it does illustrate the limitations of using ultrasound imaging for diagnosis. I would be very interested in finding out what the percentage is of patients who show negative for CCSVI in the ultrasound but positive in the venogram.

We need further study. We need scientific proof. We need answers to the many questions that have cropped up. But while this is all going on we need to insure that MS patients have access to this safe and simple procedure.

Bruce.

That is not the fact. It is deliberately fabricated nonsense.
M.

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I do not understand how we got from Zamboni, who easily found CCSVI in his patients using ultrasound, to the point where people are saying there is no gold standard for measuring CCSVI so any study not showing CCSVI is flawed. Mr. Zamboni, how did you identify CCSVI in all those patients???? Please tell us your secret!!!! What I do see all of us have in common is the desire for more scientifc prrof and study. By the way Lyon you made a mistake in your post. I believe you meant to put grape extract instead of grape koolaide?

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Can we invent some grape-extract-based-simple-IR-surgery and start our own Foundation? Mision: We don't cure any known disease, we just cure some simptoms.

Lyon, Malden, Scorpion, thank you all for your responses.

I was feeling kind of bad because my post sat for over 24 hours without a response. I was starting to think that it wasn't controversial. Now I can relax.

Merry Christmas to all.

Bruce.

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Merry Christmas to you as well and thanks for your sense of humor.

Gooood fermented grape extract is on my table and in my glass. Salute!
Merry Christmas to all!
La salute di tutti!