This Is MS Multiple Sclerosis Community: Knowledge & Support

http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf

Dr. Simka's work, from ISNVD. His findings suggest that one-sided jugular obstruction is actually worse for our eyes than obstruction on both sides.

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The presence of CCSVI could have been determined by catheter venogram, since this was a study by Dr. Simka, who has been treating patients. That would lend more credence to the findings if it is so. It also doesn't say how big the group is of patients who had MS but not CCSVI; if it is a very small group, that could be difficult to get statistical significance out of it.

Patientx, I don't know what to make of that piece of the puzzle. What does it mean if patients with MS without CCSVI have more OCT abnormalities than patients with MS with CCSVI? First we have to accept that there are patients with MS who do not have CCSVI (or are they misdiagnosed MS?) Such patients certainly have a subset of MS as compared to the rest of us who have CCSVI as a complicating or initiating factor in our disease. Could this subset have a pure autoimmune MS? Or a misdiagnosis, with actually having hughes syndrome or vitamin b deficiency or lyme or one of those mimickers and that those are worse for the eyes than CCSVI-related MS itself?

I'm not sure if it is pertinent - due to my pernicious brain-fog - but I had OTC exams twice in Katowice under the auspices of Dr. Simka's team. Both were after US "confirmation" of CCSVI and before venogram, so confirmation of CCSVI criteria, and optic nerve issues...

In my own case (which I have no idea if included in the numbers), I had/have bilateral IJV stenoses at the valve, but dramatic effect shown on OCT exam (and my vision sucks). For what it is worth, my optic nerves were slightly better, and changing, in the interim between procedures (4 months) - according to the exams.

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My name is not really Johnson. MSed up since 1993