This Is MS Multiple Sclerosis Knowledge & Support Community

Downunder wrote:Kerri, can you check your pm's please? Jennifer

Hi Jennifer - is you inbox full - tried sending a PM but it hasn't left my outbox yet.

I will send it again on FB.

** BREAKING NEWS ** The Sunday Night Program will be airing a story on CCSVI on Sunday 6th June @ 6.30pm. I can tell you about it now as some Italians posted that Rahnee Sadler had interviewed Zamboni's colleague in Italy - with pictures - on the Australian - CCSVI Facebook group!! Check it out. I s...

Hi Nico,

You may need to call MS Australia to ask them to move it - what a pain! The number is 1800 287 367 (if you donated to Melbourne team). Kerri

Hi Everyone, I know I have already mentioned this above, but I am really searching for help at the CCSVI tent at the Sydney Walk on 6th June. We have pamphlets, which describe what CCSVI is, where people can be tested and treated & various links for more info. (Bill Younger has seen them and ok'...

Hi Everyone, Just to update you on some of the latest. CEO of MS Australia, Bill Younger, has joined the CCSVI-Australia Facebook group and has been engaging in conversation with us all. My husband and I met with him today and the summary of that discussion is on my video: http://www.youtube.com/wat...

4. PT has confirmed there is a need to raise funds to enable ultrasound and MR diagnostics to be conducted in-house specifically to improve ccsvi screening outcomes. I am actively exploring ways to do this in the next 2 months and I know I've got my work cut out but any advice is appreciated. All f...

avantitech wrote:Kerri..check your PM

Cheers

Hi Adolfo,

Thanks, got your PM. I am trying to send you a reply but it won't send - is your inbox full? Kerri

Hey Kezz! I was just wondering, did you contiune with any CRAB drugs or Tysabri during this procedure? I am still on Tysabri with much trepidation! I am taking Dr Zamboni's advice at the moment to stay on. Having said that I do not intend on being a long term user of it. I did do a video on this la...

muse wrote:For that reason I need some more facts & figures. Please, can anyone tell me how costly the CRAB +T drugs are in Australia & New Zealand?

I am on Tysabri - about A$35,000 pa. I was on Betaferon previously which I believe was around A$15,000 pa.

Hi friends,

Here is link to MS Australia's latest statement on CCSVI. It is probably what we expected to hear.

http://www.mssociety.org.au/documents/CCSVIandMS.pdf

Kerri

Kezz, I'm waiting for my friend with MS to visit me in one hour and we'll watch it with many thanks, together. In the mean time, has anyone read this? They really are forcing us and our doctors to keep it on the 'lowdown', very concerning for those of us who still havent had the procedure.... http:...

Hi everyone, Please see my latest video update 7 weeks post procedure (link below). I saw my Neuro yesterday and he told me he has never seen me so well. http://www.youtube.com/watch?v=sazvSthoBs4 I see the Prof in three weeks for a follow up, after my doppler ultrasound I am aware that I have some ...

the absolute best thing we can do now is provide prof T with the ammunition he needs to present to the hospital upon his return from o/s mid-May. by ammunition, l mean a documented diary/list of improvements you've noticed. only in that way can he present an undeniable and iron-clad case. for those...

nico wrote:does this mean it's on at 2am our time? cheers, nico

That's what I get when I do the calculations. If you register but don't attend the forum you should be sent a link to the broadcast so you can watch it in the morning at a more reasonable hour! As for me I am setting my alarm...

HI Everyone, this is what I think many of us have been waiting for: The National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and w...