This Is MS Multiple Sclerosis Community: Knowledge & Support

gibbldygook (from London, I think) has, Badger has (from Scotland) and LR1234 (also from London I think). I may join them next year if I overcome my fear of cardiac catheters..

I have no idea what the total number is mind you.

I think that Mutley comes from the UK too, but I'm not completely sure..

The Buffalo results are due out later this month. They are sure to raise awareness and to add weight to any persuasion to investigate CCSVI further.

you put this absolutely on the mark.
My wife(this account) has been suffering along time with PPMS.
She has her appointment on the 21st of April, will keep you up to date on how it goes
So Livabird can be counted (Northampton)
There has been concerns over people leaving the UK to have it done and was mentioned that we need to stay and fight this, but the more people that have this done with hopefully positive outcomes will help highlight to the powers in this country that it is worth while.

I am going in May. So we can then add Lancashire to the list

Yes I am from London, Maybe we should get a little UK thread going. There are many UKers who have had the treatment but are not posting.

L

I am one fro the UK but I was also with another man from Glasgow. He has PPMS and I have RRMS.

So count that as 2.

_________________
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March

Awol,

There is a pressure group and they handed a petition into Downing Street last week

[url]http://www.facebook.com/notes/ms-ccsvi-uk/ms-ccsvi-uk-delivers-ccsvi-campaign-to-downing-street/10150158830455713

And a private clinic in Glasgow is doing Doppler scanning and possible referal on to have angioplasty:

[/url]http://www.essentialhealthclinic.com/website/

I'm going on the 12th July

There was also wonky1, who had a sky news bit done about himself.

I was wondering, since we have all UK members here...

What is your opinion on the Essential Health Clinic? I there a widespread opinion on the standard of this clinic? Is there a UK forum where we can ask?

I am asking because a lot of Dutch want to go there and are wondering about the quality of scans offered.

Sorry to hijack this thread.

Inge

Hi
I am from London and trying to get something moving.

I signed the Downing St petition but with an election coming up nothing is going to happen.

Regards Essentials CLinic I am on their mailing list but am rather concerned about Dr Gillhooly's credentials as I do not think this is his specialist field. I googled him and got surprising results.

Hi LSITC,

I must admit Dr Gilhooley seems to be in to making profits as a retired GP. However it isn't him doing the scans. He owns the clinic and has recruited a radiologist to do the work. This radiologist has been trained to look for CCSVI.

Being on their mailing list isn't enough. You have to go on the website and book and pay (£450) for a scan. I found this out yesterday.

What results did you get when googling him?

Hi Sweetpea

Assuming that I have the correct Tom Gillhooley, his field of expertise was treating drug addicts and also nutriton. He became involved in LDN somehow (perhaps through a contact within a pharma company?) and has moved into treating MS. Not a neuro and not a vascular man as far as I can see.

Thanks for the heads up about the scan -are you paid and booked?

THE DOWNING STREET PETITION WAS REJECTED DUE TO LACK OF INFO I BELIEVE. IT HAD A HIGH NUMBER OF SIGNATURES BUT IT FIGURES THEY WOULD REJECT IT. TOO BAD A PARTY DIDN'T JUMP ON THEY WOULD HAVE GOT LOTS OF VOTES. ESSENTIAL HEALTH SEEMS GOOD BUT THEY DON'T DO TREATMENT JUST TESTING. IF THEY DID TREATMENT I WOULD IMAGINE IT WOULD BE EXPENSIVE I AM GOING TO POLAND APRIL 20. I FEEL MORE CONFIDENT GOING SOMEWHERE THAT HAS BEEN DOING IT FOR A WHILE. HOPEFULLY THIS COUNTRY GETS FULLY INTO IT BUT I WON'T HOLD MY BREATH.

LIVA

Livabird,

I missed joining the waiting list until it was too late and the list was sooo long it went into 2011 in Poland.

It appears that if you have CCSVI, Essential Health will be able to refer you onto another clinic for angioplasty. They have an agreement with a clinic close by.

Admittedly the scans are £450 which I have paid out but at least I won't have to travel all the way to Poland. Someone said that with the travel and accomodation costs it came to nearly £9,000.

I know to have angioplasty won't be cheap but it's going to cost whatever way I go

Hi LSITC,

That's interesting that the good Dr's first interest was with drug addicts because LDN was first used on drug addicts. Now he prescribes it to MS patients. He's obviously a good business man