This Is MS Multiple Sclerosis Community: Knowledge & Support

I recently had a Doppler test of R. & L. jugular.

The report came back with "no abnormality found"

I've had MS for 30 years.

Has anyone else had this outcome - if so, what now??

Ned

Sorry, Ned. My husband had the same result. The doppler did not go high up enough to catch his major blockage in both IJVs. It only covers the area of the neck...that is why a transcranial doppler is part of Dr. Zamboni's protocol. Jeff later showed major blockage on MRV and during venography...keep trying.
best,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Welcome Ned. Take heart, as there were few if any of us that followed Cheer's husband Jeff that tested positive. Mine was negative too. My MRV showed otherwise, and the venography showed some pretty glaring examples of stenosis and reflux. UT will be the wave of the future for all MS'ers but is going to be slow in coming... no pun intended...

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I showed up negative on my left IJV, despite having some serious issues on that side, and it was lower down, too.

Don't get discouraged - the experts are on it, and I'm confident the detection process will continue to get better.

Hey Ned, where did you have the scan performed?

Ned...take heart dopplr are generally not performed correctly and even if they are the technicians don't reallyunderstand what they are looking at. sclafani who is great really considers venograms where they go up your veins and look around the only gold standard of ccsvi diagnosis. he sees discepancies with both mrv and doppler imaging. I had all the above several times and what they saw problem wise once they got inside was significantly different from any images. Many docs don't even know how to read reflux. if you're in the states try to get on Sclafani list. I know he's messing with irb now but imagine that should be rectified 6 months. Good luck Barbara

Do you think it is going to take six months for Dr. Sclafani to start treating again? I was hoping it would be within the next month or two. Ugh...

Pretty happy I ran across your topic. I had a Transcranial Doppler the other day that came back negative. A little bummed at first but it was the first one they had done regarding CCSVI so I was kind of expecting it. They used the same protocol as Georgetown. But it appears that GT only sees CCSVI in about 50%. I think that in March Dr Simka put out a report that after seeing 250 patients 95% of them had CCSVI.

Hello Ned,

I had a ultrasound (doppler triplex) test done at the local hospital in Feb and I was tested in both the supine and sitting position by senior sonographer for 40 min. nothing unusual was found.
Then I was tested by Dr Simka in Poland on the 14 of April (color duplex) and after 5 min he saw that my left jugular was seriously stenosed and there was pathological flow in my system.
So I had a false negative initially and it was first when I got the results back from the MRV at the local hospital indicating be a problem on the left side.

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Hi Ned

Don't feel too despondent...I had the procedure last week in Poland. When Dr Simka came and did my doppler test he said that he couldn't really see anything wrong with either jugular.

Then I went in for the procedure which took about 45 minutes. The doctor spoke with my husband after and showed him by TV what they had done. Apparently, the right jugular was blocked and needed angioplasty and they found a faulty valve on the left jugular which also received angioplasty.

I have to say that since the procedure I haven't felt at all well. Fatigue has gone into over-drive. But I'm hoping that I will get some benefit soon.

Mrs Pooh

He has said he could get approval and be back up again as early as June, if he gets early or expedited approval from the IRB. Here's hoping....

Ned, I've read lots of reports like yours, most of whom have gone on to have major stenosis found by another IR. Only a very few people stand out as having gone all the way to a venogram and not had a stenosis found.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Maybe you can try an MRI. Both Doppler and MRI are just excuses to get an invasive venogram, which is the only truth. If your MRI is positive you will get the venogram and the surgery.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info