cheerleading

What follows are excerpts from a couple of my facebook conversations:
From what i understand from reading bits online for the past year or so my collection of

symptoms when looked at from a vascular angle make a lot more sense. I never went on to

the immune modifying alternatives cos i couldn't see the sense/worth/benefit of

purposely making a weakened body work less well by stamping on its immune system

(involving multiple injections/week) for a little-better-than-placebo effect.
I felt more comfortable dampening down the body's inflammatory ‘mopping up’ response to

the damage my immune system’s wreaking on it/myself through diet, exercise, early-ish

nights and all the other things that have helped me become the really dull person I am

today!
For the past few years i've been wondering whether i'd made a big mistake by not getting

on the modifiers early on.
'parently a vascular surgeon/interventional radiologist can go into a vein in your thigh

and make their way through your body (they've been doing similar for some heart disease

since the late 70s) til they arrive at the jugular veins and then get some balloons and

we can all have a party! (apparently you have to bring your own jelly and icecream to

the procedure which can be done in less than half a day)
no need for knocking out even!
This theory has been interesting me since last august and I get scanned in a month or so

on friday august 13th. It could all be a big conspiracy by financially struggling

vascular surgeons & interventional radiologists who've seen the size of the ms treatment

pie and want their own slice as well as the neurologists... I don't understand why the

immune aspect is put forward/accepted by neurologists when most of the immune system is

a couple of feet away from the brain (in the gut).I’m probably being overly simplistic

here. hey ho, the joys of a photographic training!
if the theory's correct the impaired bloodflow causes damage to the brain (think oxbow

lakes in geography: slow moving liquid leaves its mark). When they first 'discovered' ms

in the 1850s Charcol(?) et al commented on iron depositions being present in MS brains

and veins running through the centre of each area of damage - this avenue of research

got dropped in the 1930s in favour of the immune model because a neurologist researcher

managed to create something like MS in mice - EAE which, for the past 80 years has

become the starting point for all theories about ms. I knew learning about oxbow lakes

in 2ary school would serve me well - just never was quite sure how! I’m working this out

as i go along, hugely helped by a group one incredible lady has setup on facebook

http://www.facebook.com/settings/?tab=privacy&section=custom&h=342db15ae56ea33cfb9c8de5c

a29ee02#!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?v=app_2347471856 which been

getting information out to a rapidly growing number of people. I think there were less

than 500 members when i joined in January and now there are over 15,000. It may not

provide as many chuckles as LOLcatz but some of the articles that Joan has posted

provide a lot of food for thought. Her husband has MS and after hearing about Zamboni’s

vascular research  (which started with his wife who has MS has been tirelessly spreading

the word) her husband composes film scores and i can’t believe there isn’t someone

already writing a script for this amazing story. Even if it does turn out to be

overenthusiasm it’ll make great movie!The NY Times article

http://well.blogs.nytimes.com/2010/06/28/an-unproven-treatment-for-multiple-sclerosis/

around the beginning of July helped enormously

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.

helpers

Choosing not to take any disease modifying drugs I wasn’t seen as needing any help which is a pretty smart way for the NHS not to waste money doing unnecessary things – no need for appointments to be made to discuss dealing with side effects until the patient takes the drug she’s been told is the only treatment option. I wasn’t aware of just how much support there is on offer. If you can get in to see an ms nurse in your area do it, they’re great.

I first saw MF in 06 when i’d been eligible for a couple of years and was now considering going on one of the CRABs (Copaxone, Rebif, Avonex & Betaseron)

MF took me through how the options differed, what the ‘efficacy’ for each was, what i could expect from injection site reactions and the rest of the long list of contraindications for these therapies. I wasn’t convinced. It was the first time I’d seriously contemplated a risk/reward analysis. Very thankfully, my disease appeared to be taking a gentle stroll through my brain and spinal cord rather than a hell for leather sprint. Thankfully there were only a few warmup jogs along the way:     

I lost the ability to move half my face. Wearing an eye patch that summer to cover the one static, staring eye almost made up for the accompanying dribbling. Argh, I liked being a pirate!

A few years later, I picked up freshers’ flu when i went back to university. I  woke one morning  and not knowing which way was up promptly fell out of bed (a feat I’d never before believed possible) this lasted less than a week but seemed to mark the end of a relapse/remitting disease course for me.

I still have left side weakness which gets worse with heat, stress, exertion or fatigue (the wear and tear of daily life in other words) the vertigo bit (kind of like ‘roomspin’ at the end of a really good night) seems to be stopping by a few times a day. Luckily (in a slightly perverse way) now that my symptoms are getting progressively worse the CRABs are not going to have an effect rather than it being merely about %60 unlikely.

A review came out last week from another governmental health acronym that had analysed the efficacy and value of the CRABs. They had decided that the NHS should stop paying the 50 or so million/year prescription bill for the 'modifiers' as ms patients' disease progress appeared (averaged across thousands of patients) unchanged. I appreciate that they provide light in a very dark tunnel for some who endure multiple relapses/year. Being able to reduce that number even by a third is a good news story. MS nurses do fantastic, real, visible good whatever sort of journey your ms takes through you and, on the whole, don’t leave nasty injection site rashes!

If ms patients getting more facetime with ms nurses is the result of the NHS reducing their annual prescription charge bill (comfortably more than £10,000 per person per year for these drugs which have been shown to be not worth buying then the ms community are getting a great deal as we enter into the age of austerity.

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.

stillness

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.

original POSTED BY THE UNACCUSTOMED EXERCISER AT 00:37 0 COMMENTS