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

just read the LA Times article http://ww.latimes.com/news/nation/nationnow/la-na-nn-multiple-sclerosis-jack-osbourne-going-public-20120620,0,7938077.story

The mss aren't helping by suggesting that folk with ms keep quiet about their diagnosis if they're not famous like Jack Osbourne in case it bites them in some unforeseen way in the future.


They seem to be implying that our friends, associates, people we haven't even met yet (humasnity at large in other words) can hardly be expected to ever think of someone labelled with MS as anything other than a forever sick cripple. 


Why aren't the mss trying to get a wider awareness of what ms is?


We could begin by helping people talk about their own condition... it's fluid nature for a start


Not only does this stance from the American MS Society demean people with MS by assuming they can only poorly communicate what they go through every day but also the general public. 


Perhaps we should be applauding the MSS for their, at least, democratic treatment of all abilities. 


Is this some sort of twisty, sour tasting regression to the mean?


Assume everyone's a little bit rubbish somewhere along the line and you won't be wrong... 


Sh*t, sign me up with them now - I like the way they're thinking!


i've managed t o turn myself around in the space of one short blog post!


let it never be said that i am immoveable.

breathe in breathe out and count one...

as part of the ongoing 'self management' of my ms I have started attending a meditation class. When i found the first one (specifically addressing how we manage stress) that i tried to get on was fully booked I had some not very 'at peace with the world' thoughts swilling round my consciousness. Living well with stress may've been all booked in the first days of the new year (an alternative to divorcing your spouse, I guess which is also popular in this month) but living well with pain & illness had spaces. 


I could feel a feeling of zen positively ooze through me and we hadn't even started!


I atarted this blog post almost 18 months ago... i will get a routine going!


I set up attending this class whilst waiting for my appointment at the only place in the UK that was offering zamboni-esque scanning for signs of CCSVI in 2010. A few months after finishing the course my appointment came up fri.13th August. If you're a regular visitor to the MS forums or just have ms you'll know (even with newfound zen master strengths!) that letting go of hope wasn't going to come easily.