This Is MS Multiple Sclerosis Knowledge & Support Community

Just abit off here the Canadian channel 5news Links that Kinda thing.
Colmmc

Hey hey, ok I will take on the information pack. I will build a list of document links. Michele/ Dovechick I may need you to review it, you seem to know alot about CCSVI.

I'll get back to you in a couple of days.

P.s. Nice to put faces to the names on the facebook page.

P.p.s. BodgeIT you mentioned media coverage and events etc maybe a gathering of people outside no. 10 or some NHS headquarters, or even the Imperial College of London who were involved in some way with Zamboni's work. Maybe when the facebook group has grown.

Hi
I'm going to see my GP What do I ask him to do for me?
What do I show him?. Do I mention Poland?
Any advise welcome.
Thanks
colmmc

As understand it in the UK, you have few hurdles to overcome.

1. No one is trained in CCSVI detection or diagnosis.
2. There is no evidence, in the form of recognised research that will support you in getting anyone to attempt such a diagnosis
3. There is no proven link between CCSVI as the cause of MS

So it depends what you are going to your doctor for:
If you just want to educate him, then provide him the relevent materials and allow him to immerse himself in it.
If you want him to refer you somewhere, you're stuck...there is nowhere in the UK open taking referrels for the diagnosis of CCSVI.

I've heard many people say that they have more progress with Neurologists, GPs etc if they remove the link between MS and CCSVI.

i.e. suggesting that some of your other symptoms may have nothing to do with your MS but may be down to an undetected venus issue may get you somewhere. This doesn't go against the known and accepted course of action for MS symptoms.

At this point it may just be a good idea to see where he stands on the matter?

Thanks
something to think about,I Just want to get it out there and get more people talking.and to get it done,go's without saying
colmmc.

BodgeIT wrote about the UK:
1. No one is trained in CCSVI detection or diagnosis.
A large number of Investigational Radiologists and Doppler Radiographers in the UK would take exception to your statement. MRV is not a new technique in UK.
2. There is no evidence, in the form of recognised research that will support you in getting anyone to attempt such a diagnosis
Prof Zamboni and Dr Simka have published papers in learned journals so there is evidence.
3. There is no proven link between CCSVI as the cause of MS
So what. There is a correlation between MS and CCSVI. If significant CCSVI exists that is the rationale to treat it in itself.
Why show a link to MS ? Why ask a Neurologist ?

Before approaching a GP you must know your desired goal. I did and my GP is on board. I don't mention the liberation procedure it is a red rag to any UK neuro. I am working on private testing in GB and hope to have a solution by end of Feb.

MarkW

MarkW wrote:BodgeIT wrote about the UK:
1. No one is trained in CCSVI detection or diagnosis.
A large number of Investigational Radiologists and Doppler Radiographers in the UK would take exception to your statement. MRV is not a new technique in UK.
2. There is no evidence, in the form of recognised research that will support you in getting anyone to attempt such a diagnosis
Prof Zamboni and Dr Simka have published papers in learned journals so there is evidence.
3. There is no proven link between CCSVI as the cause of MS
So what. There is a correlation between MS and CCSVI. If significant CCSVI exists that is the rationale to treat it in itself.
Why show a link to MS ? Why ask a Neurologist ?

Before approaching a GP you must know your desired goal. I did and my GP is on board. I don't mention the liberation procedure it is a red rag to any UK neuro. I am working on private testing in GB and hope to have a solution by end of Feb.

MarkW

Please keep me /us all posted
colmmc

Hi BodgeIT

Just thought you'd like to know that there's a BBC Scotland reporter, based in Edinburgh, called Elizabeth Quigley who has MS. She's married to John Swinney who's Scotland's Cabinet Secretary for Finance.

Good luck with the campaign.

James

I saw a BBC programme that she made about 18 months ago, I remember that she was being treated with disease modifying drugs at that time.
Here is her contact address, not sure how to best use this information... A letter? An email?
Ms Elizabeth Quigley

Penicuik

Don't think that's her email address, Dovechick. I could be wrong though. It might be easier to contact John Swinney at the Scottish Parliament and ask that he pass the info on. Just a thought.

http://www.scottish.parliament.uk/msp/m ... tm#message

I'll think about contacting E Quigley's husband.
In the meantime I have heard back from the person building a website called CCSVI.co.uk. It is going ahead and should be online by the beginning of February. He is currently working on a forum module to make it possible for people to chat.

Dovechick, could you contact the dev and ask him to update the front page with a link to the petition? It can be found somewhere earlier in this thread.

I'll ask...

Balsaboy thanks for the info.

Let's send a quick email to her husband letting him know who we are and that we'd like to be put in contact with his wife. Then we can talk to her about CCSVI, what she knows ask whether she would like to contribute.

The Website in the making www.ccsvi.co.uk homepage now has a link to the petition...