CCSVI in other parts of body & MS!

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

CCSVI in other parts of body & MS!

Postby alby » Fri Apr 16, 2010 4:27 pm

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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Re: CCSVI in other parts of body & MS!

Postby Johnson » Fri Apr 16, 2010 7:16 pm

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
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Postby astro » Fri Apr 16, 2010 8:04 pm

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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Postby alby » Fri Apr 16, 2010 8:44 pm

Please keep us up to date here.
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Postby Johnson » Fri Apr 16, 2010 11:04 pm

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?...
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Postby alby » Sat Apr 17, 2010 11:49 am

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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Postby Billmeik » Sat Apr 17, 2010 12:01 pm

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Postby Johnson » Sat Apr 17, 2010 8:55 pm

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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Postby Algis » Sat Apr 17, 2010 10:37 pm

@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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Postby alby » Sat Apr 17, 2010 10:48 pm

hi Algis,
taiwan?!
i didn't know they do the procedure there too!
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Postby Johnson » Sat Apr 17, 2010 10:50 pm

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!

Postby eric593 » Sun Apr 18, 2010 9:59 am

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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Postby alby » Sun Apr 18, 2010 10:35 am

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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Postby Mutley » Sun Apr 18, 2010 11:01 am

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'
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Postby alby » Tue Apr 20, 2010 2:17 pm

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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