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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Donnchadh » Thu Apr 21, 2011 1:49 pm

I would strongly advise to get an ultrasound done PROVIDED the sonographer knows how to perform the full Zamboni protocol.

This way some insight is gained on whether you have CCSVI, and if yes, how severe. There's no chance of harm to undergo this testing-its non-invasive.

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Postby 1eye » Thu Apr 21, 2011 3:15 pm

"It's better to give than to receive.
Except when it comes to free advice, I believe."
-Bruce Cockburn

Well, good luck. Remember, the advice you have read here is worth at least as much as you paid for it. If you read enough here, on this web site, I think most of your questions will be answered. Also try http://www.ccsvi.org I would get tested at least, and if you can find the right doctor, treated. Don't wait until you can't walk.
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Postby Lyon » Thu Apr 21, 2011 3:39 pm

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Last edited by Lyon on Fri Jun 24, 2011 6:01 pm, edited 1 time in total.
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Postby 1eye » Thu Apr 21, 2011 5:50 pm

Oh, all right, Lyon, have it your way. Wait until you can't walk.

I said what I would do. About what you would do, I will not hazard a guess.

Testing only gives you information. It will not hurt. It is not the least bit uncomfortable. It's worth the price just to know what you are up against. I was not thinking anyone was still so timid and impressed by all the crap that has been thrown around as to be intimidated into not getting tested.

In my own case I had an informal Doppler session that revealed the presence of bilateral stenoses in my jugulars. I then went and paid for questionable testing in Montreal which contradicted that, featuring use of the Valsalva maneuver. So when I went to see Dr. Siskin I didn't think I needed any more ultrasound, and we went straight to the fluoroscope. I was cleared by Doppler on my later scans. Pretty much slept through the procedure.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby munchkin » Fri Apr 22, 2011 6:43 am

brianm

If fatigue is becoming an issue talk to your gp about using baby aspirin (low dose) it helped reduce my fatigue. I went from sleeping every afternoon and being in bed by 9 to just needing a rest (no sleeping) in the afternoon.

It didn't do anything else for me so I had the procedure done with some temporary improvements and have ended up with an occluded LIJV and fears about the right vein.
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