This Is MS Multiple Sclerosis Community: Knowledge & Support

Sigh. I guess my point is completely lost. We too, are able to get refunded from the social security system here, but before we went to the second doctor we went to a different doctor. This doctor didn't see anything abnormal...but we paid her 80€. So, even though your doctor is trying to learn the protocol, I just think it would be best to take advice from the doctor who started this ball rolling, and really know the difference between a normal person and a person with blockages. I don't care if she charges, or even if you get reimbursed, I just think, before she opens shop, she should be able to really know the technique.

Australian MS Researchers show interest in new CCSVI Treatment:

MS Australia and MS Research Australia (MSRA) are very aware of the reports from Italy and Canada regarding the vein disorder Dr Zamboni has called Chronic Cerebrospinal Venous Insufficiency or CCSVI. We are naturally interested in any diagnosis or treatment that may hold promise for people with MS. We are also aware that researchers in Australia are in active dialogue with the Italian research group.

MSRA understands that the diagnosis of CCSVI involves the identification of insufficient ‘draining’ of blood from the brain and spinal cord in certain patients and that the residual iron deposits may cause inflammation. The impressive evidence of improvement in many cases following the successful suppression of inflammation suggests that the postulated mechanism underlying CCSVI may operate in only a percentage of cases. So, while there may be a link to MS including Primary Progressive MS, researchers must still prove that CCSVI operates in more than just these cases.

Acknowledging the positive outcomes for the limited number of patients in Italy treated so far, researchers in Western Australia are looking at ways that Australian data can be added to the trials that are underway in Italy and possibly soon in Canada.

MSRA will monitor this approach as it develops and post further notices as information is made available.

This is on the MSWSA website.

"The impressive evidence of improvement in many cases following the successful suppression of inflammation suggests that the postulated mechanism underlying CCSVI may operate in only a percentage of cases."

OK, so we don't have just one disease process, we have more than one ? So you are willing to admit that CCSVI works for some people with MS and not others ? Good old Occam's Razor would not allow this. The simplest explanation is the most likely. Why speculate about the existence of multiple causes of Multiple Sclerosis ? We have one good theory now that needs to be pursued posthaste.

ozarkcanoer

Very well done, marzy!!!
That's the 'grass roots' type stuff which is going to help CCSVI succeed.

Phil

Hi everyone,

I am a bit perplexed why a debate about whether or not a radiology practice charges has started.The issue here is SHARING of information.I am just letting Aussies know of my experience and a valid contact in Melbourne,Australia.
I chose to pay,knowing that the sonographer was not an 'expert' in CCSVI, however I want to add that she followed the papers protocol and tests for the 5 parameters of CCSVI.Using the colour doppler, reflux and stenosis are clearly visible from a normal IJV and in my case, she did see some mild reflux ,but not enough to meet the papers criteria( >0.88 sec =reflux).My results were classified as normal because in order to qualify for CCSVI 2 out of 5 parameters of the paper need to be met and these include measurements from the intracranial examination.At this point in time this practice does not have the low frequency probe for this test.(as stated before)
People can make up their own mind whether the info I have provided is right for them or if they want to pursue their own leads.
I personally would have paid more just for the opportunity to have someone interested in CCSVI and for the time and effort this sonographer put in(others said it was not in their standard protocol)
Thanks
Marzy

OK,

I saw Dr Julie Gregg in Melbourne this morning for Doppler Ultrasound of my neck veins (jugular and vertebral). She could clearly detect low blood flow in my left juguar vein...which was no surprise to me as i have a pronounced feeling of discomfort in this place.

Anyone else who wants to visit Dr Gregg, please make sure the referral states DOPPLER ultrasound...so she can allocate enough time for the appointment (regular ultrasound is a faster process).

$225 for analysis..and received $144.10 back on medicare. Was happy to know this new information about my health - at any price! I'll probably be getting an MRV soon to show more detail of my left jugular.

best regards, hwebb

This all great news for Australia and Melbourne in particular (though I'd travel anywhere to do the tests and spend whetever it takes).

My great news is that my neurologist has just arranged for my MRI in January to be changed to an MRV. I have PPMS so not sure what to expect/hope for. But at least there are professionals out there who are willing to look into the new research.

Does anyone know what 'dye' they use to help the veins be more visable? They're using 'gadolinium' in the MRI stage. I was wondering it it's the same for the veins?

Here's hoping.

A German University in Frankfurt where you can get a MRV after the protocol of Prof. Haacke now does use exactly this contrast agent.
Best
Muse
http://www.csvi-ms.net/en

ok, which is it I'm from Sydney - can I ask my neuro to refer me for one over the other? Does the MRV show up venous stenosis just as easily as Doppler? I want particular focuss on what my Azygous (sp?) vein is doing as all my plaques/MS are in my spine.....no brain lesions to date (well, in 20 years of MRI's of my brain, still clear TG!!)

I believe the Doppler indicates blood flow...so helps to pinpoint the problem areas. Then the MRV shows a whole lot more detail

hwebb

Thank you Muse, for that web site.
I need to make sure I'm armed with all the right information before I have the MRV!! I am now going to ask for the azygos vein to be included.

All I can do is hope something shows up. I have PPMS so a blockage could be anywhere. I do have brain and spinal lesions too.

Good Luck to everyone.

You are welcome and the best of luck Downunder! At the moment I’m waiting for an answer of a surgeon from Wellington/NZ, whether he is interested in such a job.
But anyway nobody can stop me now to get fixed my V. jugularis!
Best
Arne aka muse
http://www.csvi-ms.net/en

p.s. That’s me http://img9.imageshack.us/i/stenosevena ... sarnr.jpg/ and my “CCSVI in MS - MRI" at my own expense (done in a village hospital, 40min scan., without contrast agent and a useless radiologist who wasn’t able to read his own work) .But....at the end I got my diagnosis!

Dear hwebb,

Glad you had a chance to see Dr Julie and have the Doppler.
Please keep us updated as to where and when you are going to have your MRV and your results.
As described in earlier posts for others wanting a referral for the doppler please make note of Dr Julies specifications re the referral.They must state doppler ultrasound of vertebral and jugular veins and the item number for the test is 55276.Specific clinical reasons for the examination should be given.
Hope you all had a wonderful Chrissy
Marzy

Hi DownUnder,

who is doing your MRV (you're in Melbourne right?)?

I received the written report for my recent Doppler Ultrasound. It turns out that the blood flow in my left jugular vein is about 95% less than it should be (yipes). My GP and neuro are away at the moment, so not sure who to get to do the MRV. I tried another GP...who said to wait to contact my neuro.

I am particularly keen to take action on this as the left side of my neck is increasingly painful, and my voice has changed quite noticeably in recent months...especially in the last few weeks.

hwebb

Yes, I'm in Melbourne. I'll post how my MRV goes on 8th Jan.

I'm not convinced the proceedure will be done correctly, or that my neurologist is on the same page as me, so I'll see how it goes before I go further.
And I will go further as I have PPMS and don't have even a year before I'm permanently wheelchair bound and permanent damage is done.

Cheers DU