Dr Simka (Poland)

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

Postby crocky » Sat Dec 12, 2009 2:13 pm

Hi
I'm ready to sign a uk petition, once all have decided upon the correct wording
User avatar
crocky
Family Member
 
Posts: 69
Joined: Wed Nov 25, 2009 4:00 pm

Advertisement

Postby Johnson » Sat Dec 12, 2009 2:13 pm

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.


Good idea to run it past first. I agree with Ted, re: the wording. I did not sign the other one because I saw more than one error, and factually incorrect statement. I think that it is a good idea to have all the ducks in a row, so that it is not dismissed.

Further, a hand-written letter goes a lot further than a mass electronic petition. Most politicians will respond to an actual letter, whereas electronic petitions can be dubious, and are often dismissed as "chatter".
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby crocky » Sat Dec 12, 2009 2:39 pm

Hi Mutley

Just posting to wish you all the very best on Tuesday - its all just so exciting and Ill be glued to this board to learn more about your visit to Dr Simka.
I do not have firm dates yet, but he has outlined April for me to go and visit - can hardly wait!!
Claire too - I am waiting to hear all about your experiences with baited breath, though I realise you have longer to wait than Mutley.(less time than me though!)
Edser - I am also following your progress, and am very excited for you.
I just wish all on these boards, especially those who are waiting for liberation, all the very best - Love Suzanne
User avatar
crocky
Family Member
 
Posts: 69
Joined: Wed Nov 25, 2009 4:00 pm

writing letters

Postby Dovechick » Sat Dec 12, 2009 2:46 pm

Johnson (whose name is not really Johnson) I agree with you. I have already written a letter to the Director of the UK MS society, but I think any legitimate and well worded missive should be used. Sometimes these petitions can be multipurpose and can cover a lot of ground whereas letters have to be written to individuals and often tailored to the person or organisation...
I have also emailed copies of the Zamboni papers to a couple of Neurological research centres in the UK and am interested in doing anything that will raise the profile of the Liberation procedure in the UK.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 4:00 pm
Location: Sussex UK

Postby Mutley » Sun Dec 13, 2009 12:16 pm

crocky wrote:Hi Mutley

Just posting to wish you all the very best on Tuesday - its all just so exciting and Ill be glued to this board to learn more about your visit to Dr Simka.


Thanks Suzanne, I look forward to telling you all about it when I get back!

April isn't that far away so you'll be there before you know it! :D
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 4:00 pm
Location: England

Postby ClaireParry » Sun Dec 13, 2009 1:18 pm

Hi Suzanne,

I've been sent roughly March for tests, but realised that it was an automated reply but live in hope!! Looking forward to hearing Mutleys experience.

A No10 petition is a great idea, but I think people are right. The wording needs to be just so. I don't know enough I suppose to get it right!
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 3:00 pm
Location: Worcestershire, U.K

Postby crocky » Sun Dec 13, 2009 2:08 pm

Hi Claire

Guess we both have to learn to be patient - never my speciality!! I'm also glued to this forum waiting to see how Mutley gets on - all the very best to him - love Suzanne
User avatar
crocky
Family Member
 
Posts: 69
Joined: Wed Nov 25, 2009 4:00 pm

Postby Robnl » Sun Dec 13, 2009 2:11 pm

Maybe we can do a little nvemtarisation...

I'm on the list for April

Robert
(i've read about people on the March list, April and Septemer)
User avatar
Robnl
Family Elder
 
Posts: 428
Joined: Sun Nov 08, 2009 4:00 pm

Postby Johnson » Sun Dec 13, 2009 2:26 pm

There are twenty on the list for May, too.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

CCSVI

Postby Edser » Sun Dec 13, 2009 5:56 pm

Image
Anna & Myself @ our Tattoo Convention(Midleton,Ireland)
Happy Day's :D :D :D :D :D :D :D
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
Edser
Family Elder
 
Posts: 152
Joined: Mon Oct 26, 2009 4:00 pm
Location: Co.Cork.Ireland.

Postby Robnl » Mon Dec 14, 2009 1:12 am

On the April list i see 24 people

Robert
User avatar
Robnl
Family Elder
 
Posts: 428
Joined: Sun Nov 08, 2009 4:00 pm

CCSVI

Postby Edser » Mon Dec 14, 2009 3:10 am

Good Morning TiMS,
DAY 12
The bruising in my groin is gone.
I've got propper movement in my neck after the 1 STENT in my right Juglar.
My finger's are warm BUT there is a numbness on the tops of them.(I don't know is this a Positive 0r Negative thing)
Is there any IRISH people going for the procedure in Poland?
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
Edser
Family Elder
 
Posts: 152
Joined: Mon Oct 26, 2009 4:00 pm
Location: Co.Cork.Ireland.

Postby ClaireParry » Mon Dec 14, 2009 5:00 am

Not sure where I am, was sent a mail saying March for tests and September for Liberation and then realised it was an autorespond. Replied saying please book me for tests in March but nothing yet. I'm trying to be patient!!

Has anybody got a firm date?

Claire
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 3:00 pm
Location: Worcestershire, U.K

impatient for Poland!

Postby crocky » Mon Dec 14, 2009 6:13 am

Hi Claire, I do not have a firm date yet - just said April on the reply and would contact regarding a firm date in the next couple of weeks - I know, waiting is agony, but seems as if Dr Simka is one busy man now!
User avatar
crocky
Family Member
 
Posts: 69
Joined: Wed Nov 25, 2009 4:00 pm

CCSVI

Postby Edser » Wed Dec 16, 2009 7:01 am

Good afternoon TiMS,
Thank's to everyone who comment on my update "Day 12" after CCSVI Procedure.(NO ONE) :? Any way that's beside the point.I'm doing my best to spread the word,with regard's to CCSVI.The following link is for anyone who may be interested in CCSVI.
<shortened url>
Slainte Mo Chara
Edser & Anna
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
Edser
Family Elder
 
Posts: 152
Joined: Mon Oct 26, 2009 4:00 pm
Location: Co.Cork.Ireland.

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service