QueenMum wrote:Hi Dr. S.,
You recently mentioned "stenosis of the veins draining the liver" and I started to wonder...
I have really been struggling the past two weeks with pressure/pain/bloating in my upper right abdomen. It gets to the point where I often feel sick, weak & nauseated. I assumed it was the "MS hug", a phenomenon familiar in many PwMS.
Could the pressure/pain/bloating I'm experiencing be "stenosis of the veins draining the liver"? How do I find out if this is what I am experiencing? What tests do I ask for? Or am I screwed because this falls into the whole CCSVI paradigm?
I see my GP on Wednesday to go over blood labs (a whole other story! ).
As always, your knowledge & willingness to educate us is SO VERY APPRECIATED!! Thank you!
girlgeek33 wrote:Dr. Sclafani,
Reading and researching these past 5 months makes me wonder, for those with MS that do not have stenosis, have had all of the tests by someone knowing all that they should, I wonder if they need to look further in the vascular system? Study these patients more in depth? How important do you think it is to do more to see why these patients do not show the same stenosis?
And not surprising reaction, as this "normal abnormality" issue was the same reaction I faced in Belgium, when showing my general practioner my doppler result. "Oh, interesting, so what's this? Considering this a problem? Nodding ironically...This does not mean anything...your other jugular will just compensate for that...". He even approached me angrily why all MS patients were suddenly coming to him with this and that as long as the Neurology research dep in hospital (which he had contacted) would not take action, this could not be scientifically sound. He is now no longer my practioner, although know him since childhood...to react so insensitively and offensive with a patient seeking help/advice, there are other ways of expressing your opinion...coin wrote:indeed it did sound strange but he was really pointing out that he is not an expert;-)) I guess my husband has anway to go for the invase procedure and doppler to have an almost chrystal clear result:-))
Yes, I would think if the radiologist was not trained for the CCSVI protocols, the "normal abnormality" could indeed be a CCSVI issue that is underestimated...and other additional tests as doppler, maybe a more specific MRV according to CCSVI protocol + venography should showcoin wrote:hm, so at the end of the day it was acctually "good" news, that he is normal abnormal;-))?
i think that the diagnosis of ccsvi is difficult. none are expert at this since we are still in the phase of discovery. I would not trust one study. i would not trust anything short of catheter venography with ivus
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