My Story : MS and the Unwelcome Guest

[NeverBeenNorthOfTheM25]

I feel like a complete a-h0le as I dont have time to watch the vid!

[cailin maith]

I feel like a complete a-h0le as I dont have time to watch the vid!

Make time - it's only 10 mins - I watched it while making tea last night.

And then sign the petition.

[Board Game Geek]

Thanks for all your support.

I'll explain what CCSVI is from our Group's Patient Pack.
(Chronic Cerebrospinal Venous Insufficency)

This is in layman's terms.

**************
In late 2009, a research study conducted in Italy by a cardiovascular surgeon called Dr. Paulo Zamboni discovered some unusual findings in MS (Multiple Sclerosis) patients.

[Note : He started the research in 2006, and concluded in 2009]

A group of 300 patients were blind tested (the researchers didn’t know who or what they were testing, in order to unbias their results).

235 patients of the group did not have CDMS (Clinically
Diagnosed Multiple Sclerosis).

Of this 235, 60 were perfectly healthy and the other 175 had other illnesses, including Neurological illnesses such as Parkinsons, Stroke and TIA, and other immunological diseases.

65 patients in the group did have CDMS (Clinically Diagnosed Multiple Sclerosis).

The findings were nothing short of amazing.

The researchers identified a serious problem(s) with a number of patients, involving blood flow in their veins, located mainly around the neck area.

When the results were announced, and they were given the real medical notes of the patients who they had tested, they were shocked to discover that nearly every single person with these blood flow problems was a Clinically Diagnosed Multiple Sclerosis suffer.

The chance of this is unprecedented.

They then surgically operated on these patients and expanded the veins, and the patients reported a variety of considerable improvements to their MS conditions, from mild alleviation in longer-suffering patients, to almost complete remission in patients with new MS diagonoses.

Some patients reported that their veins closed up some months later, and the MS came back. Coincidence ?

As an MS sufferer myself, I’ve seen plenty of “quack cures”, but this is the first time I’ve heard of surgical intervention having an affect on MS sufferers. More research is needed.

Other countries are researching this, but not the UK !!!

*****************

Since November 2009, these findings have gone worldwide, because of the surgical intervention findings. Docs like real medical facts, not internet pills and so called cures.

It's meeting with a lot of opposition, because it challenging deeply entrenched opinions that MS is an auto-immune disease.

To be honest, it needn't challenge opinion at all. It merely says "the venous flow is the PRECURSOR which trigger the auto-immunse response."

Therefore those who postulated the auto-immune theory don't have to be proved wrong or made to look stupid. They were half right. That's the angle I'd go with to help people save face.

Our Facebook Group exists to call the UK to action and conduct our own research. We're not saying "Do the ops now". We want independent verification.

Poland is doing Ops in a clinic, and I know people who have been and they have benefitted. Dr Simka's Clinic. It's approx 5K for an op.

Bulgaria has in the last few days, announced a new clinic to do ops, but we have seen their prices and they are very expensive. We know nothing about this clinic.

India has also announced a clinic, and again we know nothing about this clinic.

Canada is about to launch it's own study in Hamilton, so correlate with the Italian findings or not.

A University Hospital in the USA is also mid trial research with 1500 patients to check the finding.

In the UK ?

Nothing.
Nada.
Zip.

We approached the National MS Society and said "Oi ! You get millions in funding. Do some research. They replied "No. We are not convinced. However, we have an exciting new drug pipeline until 2015."

As I explained to the MS Society, they are not in a credible position to denounce the Italian Research based purely on personal opinion.

So basically, we set up our Group to lobby the UK to do our own research without the help of the MS Society. They are irrelavant to us.

In the 3 weeks we have been going as a Facebook Group, we have been joined by 700+ members. CCSVI action groups are appearing every day around the world.

We have had several successes, and although I'd love to say, I am under an NDA, reagarding the UK and Research.

That is enough to tell you that something is happening here.

We've been given permission to release the news when ready, and I've been asked to be the contact with the National Press for interviews and so forth. I'm just glad I can do something in the team that I enjoy.

I hope that fills you in on any questions, and if you or any members of your families, friends or colleagues endures with MS, you are most welcome to join our Facebook Group at MS-CCSVI-UK, where you will be the first to know of any news, plus be kept up to date on developments as they occur.

Thank you.

BGG

[chef]

That video certainly puts your life in perspective and making more people aware can only be a good thing.

Chef

[mudskipper]

Thanks BGG - that's really interesting stuff. Only vaguely know one person who has MS (two if I count myself as 'knowing' you!) but always had a fascination with medical stuff - wanted to be a doctor till when I was a kid! I think it's tempting for anyone suffering from a long term illness to clutch at any straws going, but it sounds like this does at least warrant more research - I can understand the NHS not wanting to know till it's proven, but I can't understand the MS charity not wanting to fund research - and it sounds like the operation is relatively cheap and simple.

[milanbenes]

a teacher at my school suffered from it


in the past, well before today, when I would he the term, 'he / she is a sufferer of .....'

it didn't really mean much to me

but BGG your information gives the term 'sufferer' a new meaning for me, in as much as, it means, you are suffering, you suffer, your life suffers, as a result of this condition


I have never thought about it like that before

Milan.

[scooterscot]

I used to work for a company called W L Gore & associates, they specialised in the exploitation of ePTFE (expanded polytetrafluoroethylene).

Just reading about blood flow somehow reminded me of them and the techniques clinicians were putting into practice to replace human veins and arteries,

http://www.goremedical.com/en/file/AH1316.pdf

[cailin maith]

Can I just add a for Halo please.

Having met ye two - I like ye both. And I think ye are made for each other!

[Gonzo]

Very moving BGG.

[Board Game Geek]

+++ NEWS UPDATE ON MS +++

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines.

This paper can be brought/linked to interventional radiologists and vascular surgeons.

CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

In layman's terms, this means that they have found something unique to MS patients, that they had not found before. CCSVI is where veins carrying blood from the head dont drain properly. They are either pinched almost closed, or kinked severely affecting the flow.

The blood lingers too long in the brain, and deposits too much iron which is toxic in large quantities...and then, preliminary research would suggest, the auto-immune system kicks in to attack the iron, and then causes lesions on the brain. (The latter needs further research, but the former CCSVI is now accepted as being a precursor from birth)

Several hundred people who have had angioplasty to either ballon or stent these incorrect veins, have reported considerable relief from MS. Vision has returned in some, mobilty in others. Overall well being in nearly all.

However, first hand reports from those with long term MS, report smaller benefits, because of the accrued damage is greater over the course of their disease. But, they also report that they are no longer deterioating and moving closer to the end of the cliff. So even for them, that is highly significant.

Rather weirdly, some who have undergone the experimental surgery have reported a very unusual change in their vision, which they describe in TV terms as going from Standard Definition to High Definition. Weird.

Could we be turning in to the next Terminators ?

Still, this is an interesting development with the ratification of the congenital condition.

I'll keep you posted.
(I'll be back )