Reynaud's and CCSVI?

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Reynaud's and CCSVI?

Postby Boogshine » Mon Jan 04, 2010 10:38 am

I haven't heard any connections drawn yet, but maybe I haven't read enough. I've only been diagnosed about 20 months now.

I've had noticeable terrible circulation in my fingers and toes since I was 15 (Reynaud's), but also get flushed in the face, overheated easily. These phenomena would lead me to believe I probably have CCSVI and ought to get myself a Doppler. Anyone heard that connection made?
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Re: Reynaud's and CCSVI?

Postby euphoniaa » Mon Jan 04, 2010 3:29 pm

Boogshine wrote:I haven't heard any connections drawn yet, but maybe I haven't read enough. I've only been diagnosed about 20 months now.

I've had noticeable terrible circulation in my fingers and toes since I was 15 (Reynaud's), but also get flushed in the face, overheated easily. These phenomena would lead me to believe I probably have CCSVI and ought to get myself a Doppler. Anyone heard that connection made?


Hi Boogshine,

There's been a giant discussion about Raynaud's that was moved from the CCSVI Forum to the General Forum, since it's common through the whole population, and not just in MS patients.

Here's the link:
http://www.thisisms.com/ftopict-9301.html

As for the flushing/overheating, CCSVI is such a new theory that they're only beginning to figure out the "connections" between MS and CCSVI and how to identify it in a patient, even with the tests that are available.

Read all you can here about testing, but keep in mind that CCSVI is about a brand new approach and the "facts" haven't been established with certainty yet anyway. Good luck and keep reading as the new information unfolds.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jimmylegs » Mon Jan 04, 2010 3:44 pm

since it's common through the whole population, and not just in MS patients.

also since it started out to discuss raynaud's and ms, with no initial connection to CCSVI.. the thread is starting to get around to potential connections to CCSVI now, i think...
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Postby euphoniaa » Mon Jan 04, 2010 4:07 pm

So...if we decide that Raynaud's DOES have a connection to CCSVI, and if they finally confirm once and for all that everyone with CCSVI has MS, and everyone with MS has CCSVI, and no one else has either one, then that means that everyone with Raynaud's must have both MS and CCSVI, and then we won't need all that Doppler/MRI/MRV/spinal tap testing to dx us with either of them after all? That IS what it would mean, wouldn't it? Cool! :D

Sorry, I got carried away. I'm truly excited and looking forward to the future surprises and improvements that I do expect will come with this new approach to research, but some of the speculation is pretty contradictory. :)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Mon Jan 04, 2010 4:49 pm

P.S. The problem with our determination to find more and more links between our varied symptoms and CCSVI...too many discoveries like that would therefore make it less and less likely that CCSVI is connected to MS.

...it's not always MS...it's not always MS...it's not always MS... :)

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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