Any body having any luck with Poland?

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

Postby ClaireParry » Thu Dec 17, 2009 6:20 am

Hi Selkie,

Actually heard from the man himself today. He sent a mail saying simply - How about 9th Feb for diagnostics?.

I of course replied Yes and now await confirmation.

In an earlier mail I did say that I just want the Diagnostics for now so don't know if that has made a difference.

Best Wishes

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Postby Algis » Thu Dec 17, 2009 6:41 am

Cool - Keep us in the loop :) Go Go Go!!!
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Postby selkie » Thu Dec 17, 2009 11:18 am

Hi all,

Claire that's fantastic! And so soon! I think I'm beginning to lean toward just diagnostics at this point, maybe I should email that - though I don't even have my passport yet and need to do that. I have trouble driving and that sort of thing, so must depend on others. I hate it!

Erika, thank you for that information - and if I don't hear from Poland or Stanford, will give me other avenues to research. I'm so glad you're doing well. You really are a pioneer to have this treatment that is so new. My hope is that you will get relief from ALL MS symptoms. That's my hope for us all.

Adam, I'm afraid many health care systems in the world suck, not sure if it's because their socialist. But it seems to me any abnormality in the vein needs to be treated; it doesn't need to be labeled as a treatment for MS.

The capitalist system of profit over people here in the U.S. also means thousands have no health care at all, including people with MS, so they have no hope of traveling to find this treatment or even going into debt to get it as they have nothing to hock.

Johnson, I don't know what the answer is because I know people in the U.S. who can't get treatment because of no health care insurance. In a better world there would be health care benefits for all in every country. That is my wish, but I've no clue how that becomes reality.

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Postby ErikaSlovakia » Thu Dec 17, 2009 11:48 am

selkie wrote:Erika, ...
My hope is that you will get relief from ALL MS symptoms. That's my hope for us all....

Oh, thank you selkie!
I have not even been dreaming to get that well!
My dream is to get well enough to be able to work in Austria - somewhere around Vienna. I am not even able to work in my little town.
I hope it might become true next year. It is my only private dream now!
Well, we will see in one year...
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 Brynn » Thu Dec 17, 2009 4:52 pm

That is tremendous news, ClairePerry! Knowing what you are dealing with will make the wait (hopefully :D ) that much easier! It isn't too often that we WISH for a problem! :lol: I got another quick email today from Dr S that said more details would be coming in the near future. Erika, it is so wonderful that you are still feeling good. It gives us such hope for positive change. Johnson, I would be happy to join your financial pool if you get that going with Dr S. Take Care All, Brynn
41 years old, dx 1998, current EDSS 6.5
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