This Is MS Multiple Sclerosis Knowledge & Support Community

JoyIsMyStrength wrote:You mean *gasp* that this disease isn't all my fault? That when someone sadly shakes their head and says accusingly, "It's all that Diet Coke you used to drink..." I can say nope, sorry, this is congenital...

I will still avoid Aspartame just on general health principles but this is very freeing news. Or... liberating!

Although it's starting to look like CCSVI is the best treatment yet for MS, I do believe diet and what you eat play a big role. Too many people have been helped by diet to overlook it. Perhaps things like aspartame are not healthy to an immune system that's already reacting to iron deposits in the brain.

I'd say it starts congenital, but I'm sure there are influences that can worsen or improve the condition.

Another thought: We already know that reflux isn't always caused by stenosis. Does this classification mean that CCSVI is differentiated from other (maybe non-congenital) venous conditions - maybe some also leading to MS? Think of weak vein walls or things like that...

This is HUGE!!

This is groundbreaking - I am showing this to my brother's doctor on Friday night at our weekly MS meeting - let's hope we can move this forward in Ireland.

cheerleader wrote:

AlmostClever wrote:So...can they prove MS is caused byCCSVI?
I assume this is the next step, right?

the correlation has been shown by Dr. Zamboni. Now the research needs to be replicated. Buffalo will give the first indication if this is so.
cheer

Zamboni is also in 2010-2011 conducting a further study on doppler versus MRV - the project was finally approved start Jan. I'm eagerly waiting for Bologna to call me (am on their waiting list as many others here in Italy...). See here:

"Clinical Governance Emilia-Romagna
The Emilia-Romagna Region has approved a Clinical Governance Project which is co-financed by the Hilarescere Foundation. The 180,000 Euro grant will be used to provide evidence on the diagnostic accuracy of cerebro-venous echo-colour-doppler vs. advanced magnetic resonance in the diagnosis of CCSVI, either alone or in association with Multiple Sclerosis. The Project will be conducted in the years 2010-2011 and will involve the Centre for Vascular Diseases of the University of Ferrara, the il Be.Ne Centre and the Neuroradiology Unit of the Bellaria Hospital in Bologna."
http://www.fondazionehilarescere.org/eng/progetti.html

Indeed that will be the next and hopefully final step to the correlation. Next will come the procedure and other repair treatment... Let us hope we can say goodbye to DMDs.

Dovechick wrote:Indeed that will be the next and hopefully final step to the correlation. Next will come the procedure and other repair treatment... Let us hope we can say goodbye to DMDs.

I'm just still worried it will take too long. If these basic studies end 2011 (in a way we all here already know the answer: the studies will show the MS-CCSVI link!).
I sincerely hope that they will then in 2011 not still put a broad block on interventions...and say that it's "still in experimental phase", and we need to wait for another 2 years to get further second-step jugular- and azygos vein-intervention studies finalised... but I guess by then we all found s.o. locally that will do us the intervention, also if we may have to pay them out of our own pocket.

Here in Italy, if you have MS you can ask for an "exemption sheet", which will give you free access to all MS-related treatments. So maybe this explains the block: The Italian healthcare system would need to pay it for all.. but they do not yet realise how much they could be saving afterwards!

Well, it would definitely not cost as much as Rebif - 1000$ per month times 6 years... How much did I cost my government? Plus 2 or 3 monthly doses by my dad and much more money for other stuff...

I am still thrilled with this news, although it tool à few days for me to reply. I was recovering from a very heavy trip to Frankfurt last Tuesday, where I had a MRI and got diagnosed with CCSVI by dr. Vogl (yes!). On the way back to Amsterdam I learned about this news and that made my day even greater.

I have a practical question though. I
might have the chance to meet our minister of health in 2 weeks. He is having a talk in my hometown and someone is going to introduce another MS patiënt and me to him. When everything is going as planned, we would like to raise the issue of CCSVI with him.

Here's my question; does this classification by this conference mean that all medical professionals have to follow this and aknowledge this? Or does an official institution (such as government) have to certify this/make it official before insurance will follow?

Perhaps it is different per country , bit perhaps it is a general process.

If the ministery of health needs to accredit this, then we certainly have something to talk about! Besides the question of allowing hospitals to scan and treat ccsvi ofcourse. But it all starts with the classification...

Hope someone has

Sorry for some reason I was not able to finish last sentence...

Hope someone has a relevant thought on this.
Thanks for your help!

Inge

Inge, It's probably different for each country.

And I just want to say congratulations !!! Dr Vogl sounds like a great doctor to be so open to CCSVI !! Many doctors just want to wait until there is "more evidence". But blocked veins that drain the brain are not good for you, MS or not.
ozarkcanoer

Zambonis news on the congenital is great, and there is more research funding now, but I'm still sad about the situation in Italy... I think the following says it all:


"CTV news: Italian group offers $4.5M to fund new MS research

Avis Favaro, CTV Medical Specialist
Date: Wednesday Jan. 27, 2010 5:53 PM ET

The Italian Multiple Sclerosis Foundation today announced it will allocate up to $4.5 million to fund ongoing research into CCSVI, a condition linked to multiple sclerosis...
...Roberta Amaedo, president of the Italian Association for Multiple Sclerosis, said in the release: "We need certainty about the relationship between MS and CCSVI and on the clinical course that this can cause, and on that, clinical trials will make an important contribution.”

The association also cautioned patients against seeking endovascular or surgical procedures to open these blocked veins outside of controlled research studies."
http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health


Why do they always caution us, if we can't access these procedures in italy anyway?! We are waiting since long to be called for the research studies. Lets hope things will move on now!