Dr Simka (Poland)

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

Petition

Postby fiddler » Sat Dec 12, 2009 10:08 am

A problem with this petition is that it appears to say that MS is not an autoimmune disease, but what I've gleaned from this forum is that though the initial cause may be CCSVI in most cases, the reaction of the immune system to the iron passing the BBB and the brain cell damage then takes it into an autoimmune disease phase. So setting ourselves up as being "anti-autoimmune disease" is not what we want to do, IMHO.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby ErikaSlovakia » Sat Dec 12, 2009 10:09 am

I`ve signed the petition as well.
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 ozarkcanoer » Sat Dec 12, 2009 10:10 am

Isn't the petition just for Canadians ?

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Postby ClaireParry » Sat Dec 12, 2009 10:29 am

I guess it is just for Canadians, but who knows, may be I could live in Canada one day :wink:
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Postby ErikaSlovakia » Sat Dec 12, 2009 10:30 am

ozarkcanoer wrote:Isn't the petition just for Canadians ?

ozarkcanoer

I do not care! I have MS just as people in Canada. I want to support them.
My signature was accepted.
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 ClaireParry » Sat Dec 12, 2009 10:34 am

Hear hear Erika, this is world wide movement now!
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CCSVI

Postby Edser » Sat Dec 12, 2009 10:36 am

He's booking me for tests in March, although no space for procedure until September he says. He said they can't cope with demand!! This is what was said on TiMS earlier on today. Last week he was booked out for Procedure's untill March & when Anna rang Dr Simka in November he asked us "WHEN" did we want to come for the Procedure. WOW Dr M.Simka & his team are very busy.
I've also signed the petition. :D
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Postby ozarkcanoer » Sat Dec 12, 2009 10:38 am

:D OK, I signed the petition too !!!
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Dr Simka Booked up

Postby Dovechick » Sat Dec 12, 2009 10:44 am

I think there has been a turn in the tide in the last couple weeks. I think that when I got in touch at the end of November things were still manageable but I have noticed that since then many more people are seeking treatment in Poland. Maybe we got in because we made the intial enquiry before this happened.

Regarding the petition, we could start one for the UK but maybe we should run it past the people who post here before we circulate it.
Last edited by Dovechick on Sat Dec 12, 2009 10:46 am, edited 1 time in total.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Edser » Sat Dec 12, 2009 10:45 am

ClaireParry wrote:I've just signed that petition Edser, but can we do one of those Government petitions for the UK?

I'd happily sort it if it's possible...

http://www.antrimtimes.co.uk/nhshealth/ ... 5866808.jp
Antrim,Co Antrim.I'll say IRELAND & you will say UK.But it dosn't matter.CCSVI is getting out there & people are talking about it.That's all that matters.
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Antrim Times

Postby Dovechick » Sat Dec 12, 2009 10:59 am

Edser. It would be good to be able to comment on the article in the Antrim times but I could not find a way. Some of concerns it raises are answered in the thread Cheerleader created called Just the facts ma'am' and would put right some of the misconceptions of the article, unfortunately there is nowhere to post these.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Petition wording

Postby fiddler » Sat Dec 12, 2009 11:03 am

Yes, I have no problem with the idea of a petition, but let's get the wording right. An improperly worded petition could just slow things down, because instead of getting people on our side, we'll confuse them by taking indefensible positions.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby sunlounger » Sat Dec 12, 2009 11:07 am

Hi all,

Would someone be interested in starting up a petition for the U.K.?

http://petitions.number10.gov.uk/

You can sign online and also send in written signatures :D
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Re: Petition wording

Postby sunlounger » Sat Dec 12, 2009 11:10 am

fiddler wrote:let's get the wording right


:D :D :D :D :D :D
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Re: Dr Simka Booked up

Postby sunlounger » Sat Dec 12, 2009 11:14 am

Dovechick wrote:Regarding the petition, we could start one for the UK but maybe we should run it past the people who post here before we circulate it.


I think this would be a good idea :D
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