Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby ErikaSlovakia » Mon Nov 23, 2009 10:52 pm

Algis wrote:Or should I take vacation in Poland 8O (Zubrowka and Cracow sausage, mmmhh) and see Dr.Simka/Ludyga ??

Any advise appreciated,

Algis
I do not not much about Taiwan, but I would take vacation in Poland - do not forget Zubrowka and Cracow sausage! I do not think you have it in Taiwan and I do not think you have there such experienced doctors for this case.
Of course, it is only up to you.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Algis » Mon Nov 23, 2009 11:56 pm

...do not forget Zubrowka and Cracow sausage!.


Dear; I cant wait :lol: We do find here but they are prohibitively expensive due to high tax import fees on... anything that is good...

I have to see the Neurologist next week anyway; so I guess everything will start from there.


Thank you, be well.

Algis
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Postby ErikaSlovakia » Mon Nov 23, 2009 11:59 pm

Algis wrote:
...do not forget Zubrowka and Cracow sausage!.


Dear; I cant wait :lol: We do find here but they are prohibitively expensive due to high tax import fees on... anything that is good...

I have to see the Neurologist next week anyway; so I guess everything will start from there.


Thank you, be well.

Algis

Well, neurologist is not a specialist in veins, but of course, do inform him.
My neuro does not know anything yet. If, so you should find an angiologist.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Algis » Tue Nov 24, 2009 2:33 am

Vďaka Erika :)

I get that well. I will try to have reference on angiography services here and see if there is any Doctor willing to take the challenge (not just making the exam).

I will inform the Neurologist anyway because he seems always so frustrated that he cant do a thing to improve my situation that this could cheer him up a bit. When the Doctors are happy; the patients are treated well :wink:

I will follow here and report if any issue - Cheers!

Algis
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Salvia

Postby jjmagpin » Wed Nov 25, 2009 6:28 am

Gibbledygook,

Can you pass along any information that you have regarding "Salvia"? I have not heard of this and I completely agreement with your comments that this whole issue is vascular related.




gibbledygook wrote:I think that this is absolutely the right path especially given my good response to salvia which reduces blood stickiness and helps blood flow by dilating the vessels and reducing the highly elevated levels of that potent vasoconstrictor, endothelin 1 (massively overexpressed in MS patients). I think that the vast majority of the problem is in the vasculature which is overconstricted and thus prevents normal blood flow. :lol:
Well done Dignan for finding this.
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Postby Algis » Wed Nov 25, 2009 7:06 am

...Can you pass along any information that you have regarding "Salvia"? ..



Wouldn't that be "saliva"? (water-mouth)

OR:

sage?

http://en.wikipedia.org/wiki/Salvia_divinorum
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Postby moochsid » Fri Nov 27, 2009 5:52 am

Hello
This is the first post but have been avidly reading developments in CCSVI. We have contacted Dr Simka but he's fully booked for the rest of the year.We are also trying to find any information/testimony for this treatment for those with progressive forms rather than RnR.Can anyone point to a link or summarise please?
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Postby LR1234 » Fri Nov 27, 2009 10:26 am

Both Loobie and Marie are SP.
Read about Marie in the regimens section and Loobie's blog in the CCSVI section
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Postby cheerleader » Wed Dec 16, 2009 7:59 am

Well...
It's been one year since we started taking apart the first Zamboni CCSVI paper and breaking it down into English, sharing other confirming research and wondering about the implications of venous congestion.

What a wild ride.
I miss our little back and forth discussions...they were invigorating and mind-expanding. I feel like our quiet little private cafe has been put in a Rick Steve's travel guide :)

But this information was meant to be shared. Although things have changed 'round here- the founding moms and pops have moved on, the back and forth has become a din- it was supposed to be this way.

Thanks to everyone for being here for me and Jeff. And to new folks, read this entire thread, learn all you can, find out if venous stenosis and reflux is part of your MS story, and maybe print these 50 something pages out. I know that's what I'm going to do
all best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ruthless67 » Wed Dec 16, 2009 8:15 am

Happy Anniversary, Cheerleader!

I've certainly enjoyed the ride and all the wonderful information I've gleened off TIMS is definately icing on my slice of cake. Thanks for putting youself & Jeff out there for us!!

Lora
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Postby DippyD » Wed Dec 16, 2009 8:32 am

Happy Anniversary, and thank you so so much for the education and knowledge shared. It is appreciated beyond words!
x :D
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Postby LR1234 » Wed Dec 16, 2009 8:52 am

Thanks Cheer!! It is amazing how popular this site is now:)
I hope that because of the "founding moms and pops" many people's situation can be improved.

So thanks again to you Cheer, Marie, Alex, holly, Jeff, Arcee, Cat and everyone else who was brave enough to be one of the first to undergo this treatment.
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Postby ErikaSlovakia » Wed Dec 16, 2009 8:54 am

Happy Anniversary and BIG THANK YOU!
I do not have to explain anybody how happy I am!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby tzootsi » Wed Dec 16, 2009 9:04 am

Cheer, thanks so much for all the work you've put into this, it's been quite a year. Hopefully by this time next year, CCSVI will be a mainstream treatment!
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Postby ozarkcanoer » Wed Dec 16, 2009 9:36 am

Thank you cheer. I'm sure it took a lot of stamina and courage to do what you have done. Happy anniversary.

ozarkcanoer
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