I wish you well! A thorough exam is the best bet then work from what you learn there. That having been said though, I believe that if I were you that I would see Zamboni when it is possible if you do not get results that seem to make sense to you. It is clear it is possible especially with ultrasound doppler to have a study that is missing important information.
I was surprised when Dr Dake felt my dopplers were not as well done as should be and also when he said my right VV was bad too--the interpretation I got was the left had a mild reflux and everything else was clear.
Remember too Jeffs jugular stenoses were too high for doppler ultrasound to see as well. Dr Simka mentions this is a possibility in his paper also;
Quote:
it should be stated that not all abnormalities, which are found in venographic
examination can also be visualized with sonography. For example, stenosis or occlusion in the
azygous vein cannot be directly diagnosed with ultrasounds, the same may apply to the
lesions localized in proximal parts of internal jugular veins.
It did not
look like a difficult test, they put the transducer on my neck and the technician looked to see if it was blue or red, blue meaning it was flowing toward the heart, red flowing away. It looked very cut and dried and not at all difficult. Cure-or-bust mentioned that as well. We kind of came to the conclusion that a doppler was an easy test to do with certain and reliable results, but that is not apparently so. It seems there is some art and experience that plays in to interpretation of the results as my experience and Dr Simka's comments show.
Right now because this is so new and it has not been proven that all people with MS everywhere will have this, when there are people who do not fit and seem to have normal blood flow, the assumption is that the model is wrong; and that not all people with MS have CCSVI rather than assuming the tests are not well done or accurate.
But as more research goes forward there may come a day when if you have normal tests done by a skilled person and it shows no CCSVI they will look harder for the stenosis with better technology or you will be told it is not MS and they will loook for Hughes syndrome or gluten ataxia or frederichs or any of the other ataxic diseases.
That is going to be a very good day because everyone will get the right treatment .
While it seems possible that there are a couple of types of MS where some have ccsvi and others have something else, maybe autoimmune MS, it seems unlikely that Dr Zamboni managed to find ONLY the ccsvi ones when he tested nearly 900 people (including all studies and the Liberation 100 too).... and all the MSers-nearly 400 of them- had CCSVI when they unblinded the researchers. With the kinds of numbers the Ferrara team was dealing with he should have found at least a couple of people with typical clinically definite MS and the other pattern; the odds of him somehow by chance managing to see only CCSVI MSers are just too small unless the hypothetical "other pattern" is very rare.
Not to mention the Simka team has found CCSVI in all their MSers too...
I wish you well sou!
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