On 20 Oct 2011, at 16:53, daisy wrote:

after having had a reassessment of the first doppler ultrasound scan i had in Glasgow on Friday August 13th, 2010 when i got told, the theory i had been following with some interest for over two years, was not evident in my veins I got on with life, after a fashion. 

Then i asked them, with a years more experience under their belt to reevaluate the scan and they responded in august 2011 that ”...both [IJV] valves appear malformed. There is evidence of pooling of blood seen at the lower segments bilaterally with significant flow resistance.

Vertebral veins are patent and also demonstrate normal retrograde flow with no evidence of reflux.

Impression: The appearances are inconclusive of CCSVI. Suggest an MRV for further evaluation.”

but they couldn't operate without a clear sign of constricted jugular veins. 

I tried to get scanned at my local hospital who insisted i'd need a gp referral even if i was offering to pay for the scan.

I managed to get a locum gp to refer me (english wasn't his first language) and although he was very amenable to a patient who appeared to show an interest in their health i ended up being CTscanned - this showed nothing. I was beginning to realise that looking inside the human body was as much an art as a science. 

I began to learn what the different types of scans could show. But i wasn't nearly as well versed as other MSers online.

I've learned more from them than anyone in the NHS, unfortunately.

but ultimately I guess noone can care more about our condition than us.

 I'd specifically asked NOT for a CT scan (after an email discussion with him this appeared to be the radiographer's preferred means of imaging. 

I naively thought a gp's instruction could get past this.

The neurosurgeon 'line manager' of the hospital's radioographer called me in especially to tell me there was nothing wrong, in fact, my jugulars were surprisingly wide (it didn't occur to him or me at the time to wonder what the reason for this might be).

his appointment in September postponed lining up an appointment with Dr Sinan in Egypt. In the end i'm glad his actions delayed my decision to get scanned and potentially treated by medical professionals who were at least interested in exploring the idea that a lack of oxygen could manifest in symptoms of a specific patient group