This Is MS Multiple Sclerosis Community: Knowledge & Support

I had my MRV, got results on Friday. It showed NO blood flow in left Jug
Rt is Ok I think.
I have been lurking here for 6mos, had trouble with my login.....
I tried to get to Stanford, then NY, y'all know what happened.
Then went local for MRV. I remember there was a another person that only had one Jug, they posed their MRV pic, my looked just like that.
I can't remember the person's name and would like to talk to them and found out what happened to them, what they had done.

I was praying for a blockage but not the whole Jug being closed!
What next? I am seeing the doc to talk about my next step, she has been very helpful, she is my DO doc, very opened to things, very helpful, I have been seeing her for 15yrs. I get my LDN, Prokarin, Cop, IVIG, Mino from her, I don't mess with neuros, quit yrs ago

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Mino/Copaxone, IVIG
LDN, Prokarin
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According to Dr. Zamboni there must be TWO sites of stenosis, so I suspect there might be something else wrong besides the left internal jugular vein. A Doppler ultrasound would be a good next step, assuming you can find someone who knows how to do it properly.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I don't know why that is, and I guess you'd have to ask Dr. Zamboni, but maybe it's because jugulars only get used 1/3 of the time, and unless there is a drainage problem somewhere else you can get by (though maybe that's when you need drainage the most). I have problems in both jugulars. Maybe people with problems below the neck have other symptoms (and maybe I have these too). I don't know. I'm having a problem when all these doctors are saying "study, study, study" and they don't even believe a link has been proven. So when do they get around to studying individuals, if every case is different? Maybe individualized medicine is the only answer to a problem that has been over-generalized for the sake of drug solutions. (BTW maybe only a generalist can say.) Maybe a congenital problem that's different for each person is going to kill you, but not me. I don't know. Does anybody on this Forum know?

I'm not so sure Zamboni would equate zero flow with a singular stenosis and toss out the dx. I'm also not so sure that his criteria is going to specifically include/exclude the entire 100% of the MS population. That's HIS criteria, and is what is needed to sell this to the scientific world. I would be hesitant to exclude myself from any further pursuit of this based on that criteria alone. It kinda makes too much sense to have yet another MS'er with not just a stenosis but fairly a complete occlusion, sounds pretty gun-smokey to me...

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 agree. I think CCSVI and MS are one and the same.

Also wanted to toss in, that according to the Zamboni criteria (and I mean in a strictly speaking manner), Ginger MacQueen who was just featured in the National Story http://www.cbc.ca/thenational/watch/ (at 28:00) is not eligible for a procedure. Look at how improved she's become in a short while, and how bad the reflux was on the video (one of the worst they had seen yet).

Sure gives one pause....

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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

Disagree.

CCSVI and MS are NOT one and the same.

In my opinion, CCSVI causes something to happen in the body (blood reflux/iron deposits/whatever), which results in MS (demyelenization).

Don't forget that MS is NOT a disease ... it's a result of something going on in the body that no Neurologist has been able to explain except to say that something is causing the body to attack myelin and interrupt nerve processes.

Well ... maybe that something they can't explain is the result of CCSVI? Yet they dismiss it so offhandedly.

I guess my point was CCSVI and MS aren't the same thing ... CCSVI is (most likely) what causes the MS.

What part of texas are you from? I'm sure there are more than a few Texans who would love to know where you went for evaluation. We don't I don't necessarily need a specific doctors name, but a zip code to start searching in would be lovely!
Congratulations!

CCSVI
Iron intake
Time

= MS

I looked at my MRV pics again, the neck jug (only one I got) looks narrow in spots, not a definte "crook/dent" I didn't talk the radiologists re: CCSVI thought, so don't know if that would have made a difference with him reading the scan
He suggested doing a CT scan for more info. I really don't want that, should I have a doppler now? They do colored dopplers
My zip is 77084

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Mino/Copaxone, IVIG
LDN, Prokarin
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I'll go one step further than 1eye and mshusband--and state that CCSVI is only ONE cause of MS--other things can bring on the same results.
Just for one, a rotated atlas, impeding on the jugular, would cause the same slowing of venous blood from the brain. I would also think that if your arteries are occluded, and blood to the brain is slowed, you might get similar problems.

Since we're quibbling, it shouldn't even be sclerosis -- scleroses, the "multiple" or plural. They are, like the stenoses and swollen, malformed, and blind collateral veins, webbing, etc., symptoms of something. Trauma, reflux, sometimes both? Could be a lot of things, including what the plebologists think, a congenital disease. We still don't know. But that doesn't mean don't test or treat or study. I am not in agreement with some people about the order. I think the existing studies should be enough for balloons in veins, and I think there is existing technology that's useable besides mobile stents *or* just balloons. I also think placebo is immoral, and that MS patients are going to have to die before this is settled. But I would be happy to be educated on any of these issues. Off-line or on.

That should do it! Thanks peaches for "paying it forward". I wish you all the best towards future treatment.

Heather

I wish you the best too, and don't act on anything I've said. To me this is a forum. To you it's your neck. I am not qualified to give anyone here advice, except try to smile.

Shye
I already did the atlas O thing, my was rotated but the treatment didn't do much for me. What did give me relief after that was BioCranial work but can't say after 4 treatments it lasted long.
I am seeing my doc today to go over the MRV, she doesn't know what to look for, just trying to help me.
I am now going to ask for a colored doppler, give them instructions and pray they do it right.
If the MRV IR isn't being told they are to look for stenosis, do they mention that in the report. He kept mentioning No thromobosis (sp?) only even though I think I saw some narrowing.
Thanks for the input

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Mino/Copaxone, IVIG
LDN, Prokarin
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