Nine weeks ago I was wheeled out of an operating theatre in Grodzisk Mazowiecki in Poland to the strains of Bruce Springsteen's “Born To Run”.

I had just had angioplasty on my two blocked internal jugular veins. I don't think the theatre assistant was being ironic, he just happened to choose one of my favourite songs. I will happily settle for walking properly again one day, who knows, given time I might even be able to run.

My life changing musical experience began with the cardiologist performing my angioplasty checking whether I was happy to listen to a Best of Abba CD. Barely before I got the chance to look round at the screen the catheter was in through a vein in my right groin and up into my right internal jugular vein. I felt a very slight discomfort as the stenosis on the right jugular was ballooned and no discomfort as my azygos vein was checked. Dancing Queen never sounded so good!

I got to choose the next CD – I opted for Norah Jones, nice and easy I thought. My stubborn left jugular wasn't at the same party though. The cardiologist had a struggle to get it to open. The theatre assistant had to look round for the “Big Heavy Duty Bu**er” balloon. I must admit it felt like a small pony suddenly sat on my chest and put a hoof into my jaw. I felt a tapping on my clavicle and I passed a few minutes of very deep breathing to Norah's 'What Am I To You?'. I reminded myself to be grateful that at least I wasn't feeling the urge to push! Then, with a slight clench of the doctor's jaw, my vein opened!!

I didn't quite enjoy all of “Born to Run” as I was lying on the operating table with my shaved groin exposed, feeling a bit like the last turkey in the shop at Christmas. I wondered why the staff had turned on more lights and everything was suddenly noisier – but my brain was simply experiencing the effects of proper blood flow and oxygen, probably for the first time in my life. My sight and hearing felt better immediately.

My left jugular was very badly blocked, and is still slightly blocked, but now the blood has stopped jetting back up into my brain on every heart beat. It flows down out of my brain in a nice gentle way, no longer even reaching the collateral veins my body had created to try and compensate for the severe blockage. Watching my procedure on DVD, with the before and after blood flows highlighted in contrast dye, is like starring in my own horror movie but with a happy ending. I know there is a risk of restenosis but I will gladly repeat angioplasty if I have to.

I am absolutely certain my treatable CCSVI was the cause of most of my symptoms previously labelled as MS. Maybe we should go into angioplasty with the single aim of halting progression of our MS and consider any other improvements to be a bonus (and yes for some of us the bonuses are very rewarding).

I am hopeful regarding my eventual outcome as I was only diagnosed with MS two and a half years ago. Critics say some patients don't get much out of treating CCSVI – but the longer people are left untreated the more irreversible neurological damage people may suffer. Angioplasty is primarily aimed at preventing further neurological damage. The extent to which it reverses existing damage will vary in every single one of us. Angioplasty may be a major part of our solution but we must address other factors such as our diets, physiotherapy and stress levels.

It is unethical to delay treating CCSVI in MS patients on the vague grounds that some people with long standing MS damage are not responding so well... why then hang around waiting for people to get more damage? This is precisely why treatment programmes need to be established as soon as the NHS can get teams of radiologists and vascular consultants briefed up on Dr Zamboni's diagnostic and treatment protocols. People need to be treated without delay. Neurologists can be involved in research as we are treated - assessing us before and after treatment.

Before finally travelling to Poland I tried for months in the NHS to be investigated for CCSVI. I supplied doctors with Dr Zamboni's research, Buffalo research, e-copies of Dr Schelling's book, Dr Haacke's MRV protocol, Dr Simka's notes on Zamboni Doppler scanning techniques. You name it I printed, bound, emailed, and even hand delivered stuff to doctors. I even charted improvements in my MS when I carried out a very deliberate cardiac fitness regime - which intrigued my consultant - but not enough for him to read the research paper I supplied about MS patients with adverse cardiovascular issues becoming disabled five years sooner on average than other MS patients.

So I took myself off to Dublin and paid for my own Doppler scan. This accurately predicted the blockages which were eventually confirmed and treated in Poland. (I now laugh when I hear that the worldwide MS Societies want to fund years of studies to see if Dr Zamboni's results can be replicated – doctors in Dublin and Poland found my CCSVI - completely independently!!). The NHS still did nothing despite me having a confirmed diagnosis of CCSVI and a photograph showing no blood flow in my left IJV!! At that point I was in despair – feeling completely helpless. I could barely get upstairs or go out in public for falling over. I couldn't care for my family, my house or myself. My husband died very suddenly a few months after I was diagnosed with MS and my children began to fear they might lose me too.

The NHS would not investigate or treat my condition. The doctors seemed happy to watch as I declined and staggered into their consulting rooms, and I had to hire a wheelchair for the first time to go on holiday. I provided evidence of blocked internal jugular veins but the only treatment offered was more steroids, to “see if a remission could be provoked”. A remission from my vascular abnormality?? I didn't take up the offer of steroids. I went to Poland instead.

I now sincerely question the medical ethics of doctors in the UK who have patients presenting with (CCSVI) MS symptoms who fail to refer them to radiologists and vascular consultants for a proper examination of the whole venous system including jugulars, azygos, draining veins in the brain and spine, the iliac vein, the lumbar veins etc.

There is overwhelming evidence from over 3000 people treated worldwide that in excess of 90% of PwMS have CCSVI. Surely this is sufficient evidence for investigation and treatment in itself. As venous conditions in NON MS patients (including blocked jugular veins in the case of kidney dialysis patients) are routinely treated with angioplasty - it must surely be unethical or illegal not to investigate and treat us simply on the grounds that we have an MS diagnosis? Any medical Barristers' comments most welcome!

Are doctors in the UK not OBLIGED to treat us where we have actual evidence of blockages? Gianfranco Campalini, cardiac consultant in the NHS who has been treated for CCSVI by Dr Zamboni, believes this to be the case. Relatively few MS patients have in excess of £5000 to seek private treatment and none of us should have to travel abroad for care with the associated limitations this places on follow up care.

As vascular doctors treat more MS patients it seems that blocked jugulars might be the run of the mill stuff. Even a previously undiagnosed heart condition such as PFO (de-oxygenised blood circulating the body as a result) has cropped up in a PwMS whose jugulars are clear.

The themes are recurring.... Congenital vascular defects, dietary deficiencies, lack of good blood flow and basic lack of oxygen in MS patients' brains (Professor Ivo Petrov in Bulgaria has confirmed this by looking at blood gases before and after angioplasty in patients he has treated for CCSVI).

With over 90% of MS patients likely to test positive for CCSVI, how can any neurologist responsibly prescribe drugs like Tysabri, with the associated risk of death from PML, without even referring their patients' for an assessment of their venous system? Any neurologist care to explain how Tysabri or the new oral 'tablet' might treat our stenosed veins? I don't hear of any vascular consultant in the UK prescribing MS disease modifying drugs (DMDs) for venous conditions such as May Thurner syndrome, Budd Chiari or the stenosed internal jugular veins of kidney dialysis patients. First do no harm?

Angioplasty of my jugulars has so far improved my balance, my fatigue and my cognition. Life is not over. My daughters believe they have their Mum 'back' – I think that says it all. My fear of MS has gone as I have treated the biggest contributory factor in my particular MS puzzle.

At the same time I was diagnosed with MS I was also found to have Coeliac disease (which does seem to cluster with MS) and is part of my neurological puzzle. See thoughts at the end.

Neurologists in the UK need to open their minds to CCSVI now, or risk losing the respect of many MS patients. Can any neurologist put their hand on their heart and name one patient whose MS progression was halted by any DMD? I challenge any neurologist in the UK to watch the DVD of my angioplasty, look me in the eye and tell me that the blood spurting the wrong way up into my brain was doing me no harm.

I particularly challenge the UK neurologist who suggested my friend should see a psychiatrist rather than go abroad for treatment for his CCSVI. Perhaps the British Medical Council would care to comment on the intellectual and scientific rigour behind that shocking statement. Presumably the neurologist is just unfamiliar with venous conditions which are treated with angioplasty in his hospital. No neurologist is competent to assess our vascular system let alone be permitted to deny us treatment for a vascular condition.

Someone asked me what Poland was like and I said it was like Heaven. A heaven where the doctors, including a neurologist, listened to me, respected my rights, did not discriminate against me for having MS, investigated my vascular condition and treated my vascular condition.

Thank you to my Polish doctors and nurses for giving me the chance to get my life back. Angioplasty for CCSVI in Poland appears to have provoked my remission from MS. Rather a lot of us were having remission from MS symptoms provoked during the same week in Poland. Just an amazing coincidence? I think not.

Cue Mr Springsteen:

http://www.youtube.com/watch?v=ggWZUm1ETNo

Coeliac (Celiac) Disease:

One of my neurologists, Marios Hadjivassilou, who specialises in Coeliac disease has found that gluten intolerance can cause lesions in the brain and neurological damage and he believes that anyone presenting with MS type symptoms should be tested for gluten intolerance.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737870/pdf/v072p00560.pdf

At the Glasgow CCSVI conference Professor Simka explained to me how some proteins in gluten attack the tight junctions in certain endothelial cells which are found in the aorta, gut and brain. http://en.wikipedia.org/wiki/Tight_junction gives a simple summary of tight junctions, zonula occludens, which help maintain the blood brain barrier. Could be why Best Bet diet, Stone Age diets, which exclude wheat and certain other grains, have generally helped people with MS, let alone those separately diagnosed with Coeliac disease!