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.

cat scans & lab reports

cat scans & lab reports

Another, more sensitive scan has been developed: infra red imaging of breast tissue which will catch signs of potentially cancerous tissues much earlier on in the disease process. Breast tissue is very dense nowadays apparently (polite way of saying we ladies are getting fatter?) This can only be a good thing created by researchers at addenbrookes hospital, surely?

It will only be offered privately as NIHCE has decided that there are enough effective screening methods already available on the NHS. Only about 25% of breast cancer occurs in the under 50s anyway so it wouldn’t make financial sense to roll out this scan to the general population. People with a family history of breast cancer would be able to ‘go private’ and pay for the more sensitive scan themselves.

This seems eminently fair. But i am coming at this from a slightly different angle to the general population. I have ms and since hearing of CCSVI in August of last year have been trying to get a referral in order to get a scan of the veins leaving my head. Doppler ultrasounds, CaT scans and MRVs are used every day on people with vascular issues – those who’ve had heart attacks those who are at risk of furred up arteries (due to their smoking/eating/exercise choices?) and those members of the population who have ’congenital issues’ relating to the flow of their blood. But apparently, if those members of the population also happen to have ms they're not allowed a look inside their own bodies. We have an immunological disorder and so, therefore have no need to look at our veins.

Discussing the worthiness of this ‘immunological’ conclusion deserves a post of its own so we’ll leave that particular story of mice alone for the moment.

very wary

Like many other people living with a lifelong condition I try to give my body as easy a time as possible – do the sorts of things that, in our heart of hearts, we all know our lives may be easier if we did them. But coming from good, sturdy northern European stock it goes against the grain to deprive oneself of ‘joy enablers’.

‘I’ve been working hard all week – I’ve earned this extra drink/bar of chocolate/ice cream/curry/bucket of southern fried chicken skin/bucket of ice cream/4 fingers/bottles/crates of favourite liquor’ (name your particular poison)

Thing is: it’s more than hard to rewire the thought processes/coping mechanisms that lead you to reach for the ‘one last...’ the difficulty comes from the need to keep a ‘constant vigil’ over one’s actions. Mindfulness: it seems we’re encouraged to believe is an eastern trait and not something for hearty anglo saxon stock to concern themselves with. In fact, if folk do employ mindfulness in their daily life we eye them with a certain amount of suspicion. I’m curious as to why should be, even whether it actually is (rather than just being a product of my hungover/fevered brain in this oppressively close summer heat. Awareness isn't a dirty word.

http://www.essentialvermeer.com/catalogue/little_street.html I find vermeer paintings can encourage a stillness in me when i look into them. For a moment I can switch off whatever else is going on around me.

2nd time lucky

I set up a blog in the summer to help publicise my (what should by now be a global ;) T shirt business. Not sure what my priorities were in those endless days of sunshine but they didn't include blogging!

I quite like putting my thoughts into words but making those words comprehensible to others is a very different affair.

This time round there's a new focus... I have MS and apart from once or twice over the last 15 or so years I was able to not think about it (or more truthfully; I chose to stare into my navel and worry about what might be going to happen).

Time marches on and in the scheme of things i've been doing pretty well.

At the beginning of 2009 I decided that the pipe-dream of making my way around The States with a camera wasn't likely to be anything more than that unless i at least bought a ticket.

In my 20s I'd pictured myself driving peoples' cars (grammar/punctuation is bound to be wrong please don't get all lynne truss on me) from state to state. 15 years later i decided to modify my dream. Last March I chose the month of october for my 'life-affirming' road trip (think Thelma & Louise but just me... on a train).

I had a wedding to photograph in the UK in September and i figured/hoped there'd be fewer extremes of temperature in October (nyc at the beginning of the month and SF at the end).

It was great - i have 40Gb of unprocessed images to prove it.

I had my first chat with a travel agent at the beginning of last year and went in to check a couple of things before setting off - the presence of a walking stick when there hadn't been one before saw the agent encourage me to get travel insurance (with honesty in her eyes) An uncommon sight in someone who has the word 'agent' in their job title?

I had my 'emergency' appointment with a neuro last week (my gp arranged one a couple of weeks after getting back to the UK in November).

The blogosphere is apparently the place for ranting... Let the wild ranting begin!

I trust this bound-to-be oh-so-sporadic-journal can take its place in the hundreds of other ms-related blogs out there.