CCSVI in other parts of body & MS!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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alby
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CCSVI in other parts of body & MS!

Post by alby »

While everyone focuses on veins onthe neck area near the brain (that includes me), I notice a drastic difference in vein size between my right and left arms. the veins in the left arm are readily visible but on the right arm, they can hardly be seen.
could further vein blockages or narrowing away from the neck cause ms problems? has any doctor looked into it? have you checked your arms' veins?
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Johnson
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Re: CCSVI in other parts of body & MS!

Post by Johnson »

alby wrote:While everyone focuses on veins onthe neck area near the brain (that includes me), I notice a drastic difference in vein size between my right and left arms. the veins in the left arm are readily visible but on the right arm, they can hardly be seen.
could further vein blockages or narrowing away from the neck cause ms problems? has any doctor looked into it? have you checked your arms' veins?
Brachio-cephalic plexus, where the sub-clavian veins join with jugulars, and form the vena cava. I think faulty valves here cause a lot of issues - including my thyroid drainage problem.

.Image
My name is not really Johnson. MSed up since 1993
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astro
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Post by astro »

My venogram initially showed reflux in my left IJV. Once it was ballooned, the reflux disappeared in the IJV but appeared lower, going into the sub-clavian vein. I have a meeting with my doc to discuss the implications in a week.
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alby
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Post by alby »

Please keep us up to date here.
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Johnson
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Post by Johnson »

alby - keep an eye on Dr. Sclafani's thread, he was the one who "twigged" me to the problems being lower, and upon reflection...

How are you doing alby? How are things going in Taiwan? I think the last I read of your case was diagnosis, but no treatment?...
My name is not really Johnson. MSed up since 1993
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alby
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Post by alby »

johnson, i don't recall going to tawan!!!!!!!!
but thanks fr dr. sclafani's info, i'll look at it.

and since m last update there is no more improvement, so that's why i'm thinking maybe CCSVI at other locations create problems too. i guess we, the MSers are not well oiled machines! haha...
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Billmeik
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Post by Billmeik »

http://www.vascularweb.org/patients/Nor ... iency.html


CIV is chronic venous insufficiency.
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Johnson
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Post by Johnson »

alby wrote:johnson, i don't recall going to tawan!!!!!!!!
but thanks fr dr. sclafani's info, i'll look at it.

and since m last update there is no more improvement, so that's why i'm thinking maybe CCSVI at other locations create problems too. i guess we, the MSers are not well oiled machines! haha...
Sorry alby, I mixed you up with Algie.
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Algis
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Post by Algis »

@Johnson: yep it is me from Taiwan. I got Doppler and MRx; I have a meeting with Doctors Tuesday Apr.20 and discuss the things; then if necessary we'll schedule the procedure. I have no 'results' yet.
I will open a thread when suitable.

Cheers all :)

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alby
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Post by alby »

hi Algis,
taiwan?!
i didn't know they do the procedure there too!
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Johnson
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Post by Johnson »

Oh, man! I really ought to quit while I am ahead. The pretense at lucidity no longer cuts it.

A-l-g-i-s - Algis.

a-l-b-y - alby

Best to you both.
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Re: CCSVI in other parts of body & MS!

Post by eric593 »

alby wrote:While everyone focuses on veins onthe neck area near the brain (that includes me), I notice a drastic difference in vein size between my right and left arms. the veins in the left arm are readily visible but on the right arm, they can hardly be seen.
could further vein blockages or narrowing away from the neck cause ms problems? has any doctor looked into it? have you checked your arms' veins?
Since demyelination does not occur peripherally in MS, I doubt CCSVI would be found outside of the CNS unless its relationship to demyelination is found not to be as direct as the reflux/iron deposition theory, but by some other means that could impact myelin far away.
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alby
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Post by alby »

i used to work in chemical plants and refineries for a few years, and when some piping got flow problem, like a chain reaction it effected everywhere, although to various degrees. i look at our arteries and veins the same way but much more delicate.
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Post by Mutley »

Just a hunch, but as the different causes of CCSVI are uncovered, I would not be surprised if one of them were related to genetic defects that caused veins to form incorrectly. Perhaps including veins that are too soft. In which case, I can certainly imagine vein problems that aren’t just associated with CNS drainage.

My hunch is based on the fact that I already feel like I have a vein problem in femoral artery, and posture plays a big part in influencing my symptoms of pain/throbbing etc.

I don’t know about you, but since being diagnosed with MS ten years ago my neurologists now blame EVERYTHING that I present with on MS. So I can certainly imagine other vein problems causing what are often just accepted as 'MS problems'
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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alby
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Post by alby »

Mutley,
any progress in your MS improvement? and any other MRV or doppler for your other veins? i think a full body MRV WOULD BE A GOOD IDEA FOR EVERYONE AND THAT INCLUDES ME.
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