This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi guys, first I'd like to introduce myself. My name is Gary, I'm 40 and live in London. My Mum has struggled with MS for about 25 years or so and was diagnosed SP about 15 years ago. Since hearing about CCSVI, our lives have changed, hope has returned and excited discussions about what's possible in the future are now common place.

My brother, a very determined individual has managed to get my Mum in with Dr Simka for tests happening in the next few days, with possible treatment in January.

I had done some research and spoken to a couple Neurologists here in the UK and like many on this forum was rebuffed with somewhat surprising vehemnce. Reading some of the posts here and on the Facebook page for CCSVI and the amount of hope and interest that has arisen, I became determined to do something.

My plan is to create something of a pressure group. I want to start organising a coordinated approach to bringing CCSVI to the UK. I have many ideas about what this will involved and feel certain that this is the best way forward rather than many people firing off in all directions.

If this is being done somewhere, could you please point me in the right direction. If it's not and you are interested in getting involved, please respond here and get ready for action.

Having read a million posts on this forum, I'm aware of how inspiring, courageous and determined you all are, lets focus some of that toward our common goal.

Gary

Thanks, I wish you all the best for Jan, as well as the fun bit in between now and then .
One of my aims is to get some tests started here in the UK so that we may contribute to the world wide research about to get underway. I would interested in hearing from you in relation to who you have been speaking to and what information you have provided them. One of the tasks that I would like to coordinate who has spoken to who.

BodgIT
That’s an excellent idea! When I first heard about CCSVI I was filled with tremendous hope.
I am very frustrated that so far the medical profession here are sticking their fingers in their ears and wilfully ignoring the evidence. It cannot be just coincidence that I have M.S. and venous problems were found in my neck just as professor Zamboni described.
It is so easy to dismiss any improvements as just anecdotal. Venous malformations proven by MRI scans are harder to argue with.
I would be more than happy to contribute my evidence to some kind of database of venous malformation and M.S. Of course it will be a very small database if it only had U.K. cases in it.
The list of U.K. specialists who have been approached is a good idea. Shamefully, I cut and run to Poland before I made any progress here.
PM me if you want my contact details.
Not so Wonky.

Hi Gary

I'm a relative newbie on here too and have found this site to be an absolute oasis of information on CCSVI.
Through people in here, especially Ericka, I have been in contact with Sr Simka and am on his list for April - can't wait!
I was diagnosed with rrms back in 2000 and its getting steadily worse - probably sp - I think its absolutely ridiculous that nothing is being done about ccsvi in the uk - the powers that be are just so risk averse and do not seem to take on board the desperate situation of msers who not have the 'luxury' of waiting for x years to test etc etc - the fact I have not heard of them even starting to do anything yet makes me even more frustrated.
Therefore I'm with you on any pressure group/campaign you have in mind to attempt to get the ball rolling.
Keep me posted - Suzanne

Hi Gary
I'm with you all the way, I received an email from Dr Simka today I am on the list for next November. But I still think that something should be being done here in the UK.
To that end I have last week sent a petition to Number 10.They need to see it first before it go's public ,Just to stop cranks I suppose.I should be getting it back Monday or Tuesday Then I will post it on here so hopefully we can all get behind it.But its a good idea lets make a fuss.

Colm.

I would be happy to join in any Diagnosis & Treatment in UK. It would need to be as a private patient with referral/support from your GP (fine for me). For me it is too early to campaign, lets do it first then campaign. Finding people to do the tests and angiolasty should not be impossible in London. Any thoughts on who to approach ?

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Hi
I am new to this board. Dx RRMS March 2005 - steady decline, 2 or 3 severe relapses per year, chronic fatigue. Under v good neuro at Charing X who I saw last week. He says I should not go to Poland for treatment but to wait for results of Buffalo and Stanford studies. I say yah-boo. I read testimonials on this site of people who have had liberation treatment and say their symptoms have improved greatly. Why should we have to wait for treatment when it is availble elsewhere? We pay enough taxes in this country to warrant getting someone out there to listen to us MSer's.

How do we get this thing moving?

Sometimes I doubt we are living in a civilized society, in which the first human right should be the right to health.
Zamboni has proven beyond any doubt that there is a strong correlation between MS and defective venous drainage from the brain due to obtructions at the level of the jugular and/or azygos vein. Although his discovery does not mean that CCSVI is the cause of MS, his papers say clearly that MS patients have CCSVI.
I think that there is enough evidence for MS patients to demand that the drainage of venous blood from their brain to be tested. I am not a lawyer but I believe that a GP, who refuses to refer a MS patient for such tests, fails to adhere to his duty of care.
We are not talking here of a cure for MS, all we say is that we have the right to know whether our veins from the brain are ok.
If we have an infection doctors take swabs or do blood cultures to see which bug is responsible. The swabs or the blood cultures are not a cure but they may lead to the use of the appropriate antibiotic, and hopefully to a cure.
I would suggest that the way out of this disgracesful impasse could be to sue the doctors who refuse to refer MS patients for tests for CCSVI.
Patients who can benefit from legal aid could do that for free, while wealthy patients could put their money to a very good use.

GiCi

Blatent bump!!!
I’m bumping this as I think that GiCi has a very valid point! Our campaign to get this recognised around the world will I’m sure be helped by lawyers. Also coming from a Dr it is of even greater validity.
Dr’s are, as I think we would all agree, generally very good and kind people. The organisations they work for and the bureaucracies they battle, are often cold and calculating.
Perhaps it is the fear of the law which stops many acting. Maybe we can use the law to our own advantage as GiCi suggests?

I think that we need places where the tests can be carried out by trained people. Some people have managed to get tests done for venous insufficiency but the problems were not spotted. So first lets get some centres up and running so people can get refered to them or even go private and have a 'not very expensive' doppler test done. Then with the evidence in front of them it will be easier to convince doctors that this is a valid course of action.
I will convey the sentiments of the members to someone who is trying to set up such a centre in London. He is having difficulty convincing his parent company that this may be viable in the UK.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

I have been in touch with the Royal Victoria Hospital in Belfast as they have carried out the procedure on someone. However, it has not been mentioned anywhere and they have said they are no longer able to carry out the surgery or scan any longer.

That is when I started to think something is going on here. Surely if you are carrying out a procedure that is making someones life better then it should be nothing but positives that come from it.

No not in the UK and not until all the Money Grabbers have worked out how they will receive something from it.

It is completely Unethical and makes me ashamed of the society we live in. There has been a media blackout of the subject and you only have to go on the internet to realise how big this is.

I have suffered from RRMS since 2004 and I am on the slippery slope of getting worse, slowly but surely. I am not going to stop until I get the treatment and I wish all of you the best in getting the same.

They carried out the procedure at the Royal Victoria under special circumstances. They did it at the request of a colleague, so I expect they thought that another doctor knew what risks he was taking. The NHS is unlikely to jump into a 'new' procedure without clinical trials in the UK.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Hi Gary,

Count me in. I'm more than ready for a call to action on something like this. Let's not underestimate the power of our collective will.

Best Wishes,
Mark.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Count me in too! It's ridiculous that this isn't all over the news... and really frustrating!

Count me in too! It's ridiculous that this isn't all over the news... and really frustrating!