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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Ned
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Post by Ned »

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Last edited by Ned on Fri May 21, 2010 2:59 am, edited 1 time in total.
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muse
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Post by muse »

NO NAMES of the Doctors & Hospitals who are willing to help us!!!
Please edit your post and use private mails (pm) to give the information to the other MSers.
Thanks
Arne http://www.csvi-ms.net/en
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NZer1
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Post by NZer1 »

Fly over there and tell him Arne. While your there get treated? Sorry just a thought!
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muse
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Post by muse »

NZer1 wrote:Fly over there and tell him Arne. While your there get treated? Sorry just a thought!
I’m just trying to protect one of the good doctors who are willing to help us
against his nice :x colleagues.
You are probably right that it would be the best idea to go post-haste to Australia for the procedure before I’m going to die & rot in NZ. We will see
For now I want to await further developments regarding to my complaint with the Human Rights Commission of NZ. Perhaps in two weeks we all will be a bit foxier.
Stay tuned!
Arne http://bit.ly/a3vbem
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hwebb
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great news on the western front

Post by hwebb »

Well done Ned. It's great you were able to track down a treating doctor in your home state. It would certainly be a long flight from the west coast to the east coast if you were not able to arrange treatment near home base. Be great if you could list some of your improvements in the Aussie Action thread. I know a lot of aussies have this bookmarked, so will be inspired by your story.

Helen :)
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smokey
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Re: CCSVI treatment in Western Australia

Post by smokey »

[quote="Ned"]On May 17th I had a venogram and angioplasty in Perth. All went well, and have had improvements already.



Great to hear, Ned. Look forward to hearing about your improvements.
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welshman
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Post by welshman »

Muse /Arne - you wrote that you have launched a case with the N.Z Human Rights Commission - I just read the tims forum titled
"Info on UBC Trials in Canada - Dr Tony Traboulsee Interview"
and if this is the person in charge of "our" clinical trial, then I think I need to start a case with the B.C. (Canada) Human Rights Comm.

Can you let us know how you went about / proceeded / argued this issue ? Thanks for any advice.
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muse
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Post by muse »

Hi Welshman, it’s pretty easy to make such a complaint in NZ. The first step I did online on the website of the NZ-HRC and now I’m waiting for another answer of the HRC whether they think my claim is relating to an unlawful discrimination. Btw, a lawyer had a look over my claim too and he told me it’s just perfect how it is, so feel free to use it.;-)
http://www.facebook.com/pages/Venose-Mu ... 8898891183
There is a CCSVI-group in Vancouver who are going to do the same in Canada. Go in contact with Jenna M.
http://www.facebook.com/pages/CCSVI-VAN ... 5320744..1
Best of luck!
Arne
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muse
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Post by muse »

AnneMarie comes from BC and she is keen to do the claim as well. :D
http://www.facebook.com/profile.php?id= ... ps?ref=sgm
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1eye
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Post by 1eye »

This web site is not a safe place to pass around that kind of information. Just by clicking on someone's name, everything he or she has ever posted to a topic or written in a PM is visible. Try it! Only use regular Internet email, and as this thing heats up, encryption might be a good idea. Please try this, and if I am right, make sure the right person is informed. I will try to do the same.
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"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
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sofia
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Post by sofia »

is it possible to see what we posts in private messages?
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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whyRwehere
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Post by whyRwehere »

1Eye, I am not able to click on names, just the profile button, what do you mean??
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1eye
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security

Post by 1eye »

You wouldn't think so. I thought I saw some yesterday. Anyway it is possible to take the temperature of this website by just clicking on some names. By clicking on one name you can see everything by that person to date. Try it with a few.

Chris Sullivan
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
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whyRwehere
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Post by whyRwehere »

Well, if you click on their names from the forum topic, it leads to their profiles and there you can see all their posts, but not their PMs...are you getting something else??
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jimmylegs
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Post by jimmylegs »

i can't see what others write in PMs
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
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