Dr Simka (Poland)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
fiddler
Family Elder
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada
Contact:

Petition

Post by fiddler »

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
ErikaSlovakia
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe
Contact:

Post by ErikaSlovakia »

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
User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer »

Isn't the petition just for Canadians ?

ozarkcanoer
User avatar
ClaireParry
Family Elder
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Post by ClaireParry »

I guess it is just for Canadians, but who knows, may be I could live in Canada one day :wink:
ErikaSlovakia
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe
Contact:

Post by ErikaSlovakia »

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
User avatar
ClaireParry
Family Elder
Posts: 218
Joined: Tue Oct 20, 2009 2:00 pm
Location: Worcestershire, U.K

Post by ClaireParry »

Hear hear Erika, this is world wide movement now!
Edser
Family Elder
Posts: 152
Joined: Mon Oct 26, 2009 3:00 pm
Location: Co.Cork.Ireland.

CCSVI

Post by Edser »

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
User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer »

:D OK, I signed the petition too !!!
User avatar
Dovechick
Family Elder
Posts: 350
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK
Contact:

Dr Simka Booked up

Post by Dovechick »

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 9:46 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.
Edser
Family Elder
Posts: 152
Joined: Mon Oct 26, 2009 3:00 pm
Location: Co.Cork.Ireland.

Post by Edser »

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
User avatar
Dovechick
Family Elder
Posts: 350
Joined: Sun Feb 12, 2006 3:00 pm
Location: Sussex UK
Contact:

Antrim Times

Post by Dovechick »

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.
User avatar
fiddler
Family Elder
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada
Contact:

Petition wording

Post by fiddler »

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
User avatar
sunlounger
Family Elder
Posts: 110
Joined: Wed Nov 04, 2009 3:00 pm

Post by sunlounger »

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
User avatar
sunlounger
Family Elder
Posts: 110
Joined: Wed Nov 04, 2009 3:00 pm

Re: Petition wording

Post by sunlounger »

fiddler wrote:let's get the wording right
:D :D :D :D :D :D
User avatar
sunlounger
Family Elder
Posts: 110
Joined: Wed Nov 04, 2009 3:00 pm

Re: Dr Simka Booked up

Post by sunlounger »

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
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”