NICE to know you?

This image illustrates to me the number of unknowns we have to deal with as an ms patient should we choose to employ a bit of selfcare instead of relatively ineffective DMDs. Please see here for some of the background to the DMD claim.

NICE draft guideline released this april is an update on their last 2003 guidelines for treatment of MS.

I've looked through the paper and there are a couple of things that I'd appreciate further info on:
'check for a range of not necessarily neurological things b4 giving ms diagnosis'
This is a good thing especially a vitB12 check but then later on vitD3's not recommended as a treatment option?
When will healthy caregivers get into their heads that being chronically ill you're happy to have a go at a range of things that might make life a little better?

There are no big wins or cures so we need to address everything just because a marginal, cumulative effect isn't easily measurable doesn't mean it shouldn't be bothered with.

I sleep on a slope which, after having a week sleeping on the level I believe I can fairly safely say seems to cut down on the pins and needles and other signs of generally poor circulation.

The guidelines are written from a well person's perspective but if in our day to day functioning, life cansometimes feel a bit miserable on a fairly regular basis then we're pretty heavily invested in achieving even imperceptable bonuses.  looking into aspects of magnesium deficiency which we're likely to be deficient in (dark green leafy veg preferably grown in soil that hasn't been depleted of all it's 'dirt'y good stuff.

If I had many followers I'd ask them to check out another site I'm setting up. In it I'm looking at alternatives for chronic conditions. I do hope you'll join me in finding out some stuff that might be of use and marvel at the images taken from my archive of the last few years. There's even a film of me on the page entreating us to explore to reduce the unexplained.

hope to see you over there soon

alternative you say?

Life isn't a race. The one who gets to the end quickest isn't the winner.
thank you to the young lady on my street. I took this image at the end of June 2014.
please don't reuse it without asking first.

it's been a while but I'd like to draw your attention to http://www.chronicalternatives.co.uk/ as a place to take a step back and get some distance on things we have to think about every day. It has a cat playing the piano but don't jump to conclusions!

I'd also like to take this opportunity to advertise http://www.greenmedinfo.com/blog/lycopene-matches-statins-improving-blood-vessel-function. I'm not an affiliate or receiving any kickbacks but it offers many alternatives to pharmaceutical offering (and they have the evidence to prove it.

grubby waters

Does this image illustrate a pharmaco marketing manager's new job? They often have little irrefutable proof that some of their products work and so are they preferring to create confusion amongst customers, instead?
What can we make of the new statement on statins and their relative harm:benefits to people at risk of cardiovascular events?
The guy was being interviewed on radio4's morning programme on the 22nd of March talking about this article. He was standing up for statins against the BMJ(?) statement that their risk of side effects were too high to take unless there was a pressing need (dangerously high cholesterol levels).
Reporting on the radio or in anything other than learned journals we don't get to hear about the author's disclosures but Professor Sir Roy Collins still seemed to be saying don't take them unless your at proper risk rather than a pharmashaped risk (even if you have only a 20% risk of heart attax over the next 10 years it was still worth prescribing the makers of the drug were claiming recently).
Sir RC still managed to leave a big ?mark in my mind and didn't clear anything up.
Is this a new sales tactic of drug companies?
In the absence of being able to claim out and out, measurable benefitsfor some of their products are they instead choosing to muddy the waters of their products even further in the patients mind?
Statins for MS were talked about over 10 years ago but it never gets further than talk, or does it?
Why is that?
Are they of benefit?
Why have they not been specifically trialled for MSers use?
What experience have people had in addressing their sticky blood with Simvastatin (the name being bandied about in MS circles)?

I've always felt I might be ahead of the wave and as if any more proof were needed, here is my purple cast which I 'wore' over christmas and New Year.I believe it beautifully brings out the bruises making their way down my toes rather nicely don't you think?

It's been drawn to my attention that Radiant orchid is The Colour of the Year according to pantone

post today is short and to the point. Unlike the six weeks of cast over christmas. 

The following view was joyous!

ok, so my goth party cast and radiant orchid are quite different colours but out of what was on offer at the fracture clinic (red, blue, black, white, yellow, green, orange) I came as close to radiant orchid as possible.

Purple has also been designated as the colour of disability according to the BBC's reporting of the trendsetters and marketeers. Noone's sure but perhaps it relates to disabled US veteran's puple hearts, the colour of royalty, the official colour of  the "Non-partisan UK-based Disability campaign. Advocacy group Broken of Britain. As a group in society we represent enough disposable income to be worth chasing, like the grey and pink pounds, apparently. 

Not sure if we'd all agree with that but I still managed to survive the angle grinder they use to cut through the cast without picking up further disability!

I naively hoped once the cumbersome cast was gone I'd be feeling, in comparison to how i was before the fall so incredibly, gloriously mobile.

How wrong I was but it seems nothing comes to anyone effort free.

Bring on the knitted wheelchair warmers, I say!

The UK MS Society went purple a few years ago from orange; almost a 180degree change on the colour wheel... My mistake, they appear still to be orange but the free cloth shopping bag given out at the event in 2012 is purple. 

I've been doing a number of things with/for them over the past year some of which i think I've blogged about before I would provide the links but it's a Friday evening, I've just had a glass of wine, I'm listening to the Now Show on BBC radio4 and have some photos to process for a business mentor's website. I'll put the link in a later post when my photos are included.

I also need to return a call to a lady in the process of drawing up a study or trial into an MS treatment. I really do need to read up on what they're after

a multitude of high stakes... it would seem

This article highlights some of the vested interests in ms healthcare. All the hot and fetid air that gets blown over people with ms who, you could argue, are the ones with most at stake in finding answers concerning their condition are only interested in keeping themselves as able as possible and yet have to watch grown adults squabble and name call.
I think it goes some way to explaining our (I and my fellow colleagues in disease) years' long righteous ire.
The last paragraph is worth reading I, with a vested interest found it a long article but worth sticking with.


All I can be sure of is what has happened more than once, to me. My (or our?) reporting of our own human experience is, it pains me to admit, sometimes not all that reliable. see Nagel question what it's like to be a bat.
HDensityOT (hyperbaric oxygen therapy) which results in all the tissues of the body being saturated with oxygen makes the slowly deteriorating vision in my right eye (started 12 years ago) a little better whilst breathing at pressure. This would lead me to believe that if I were to take oxygen more regularly I might get more permanent improvements.
A side effect of this saturation is better communication with my bladder and a general lightening of the world. Think of the difference between going out under a leaden, grey, glowering dome and skipping out into a cloudless, clear skied day. Trying to measure that difference has proved pretty tricky but our own wellbeing is one of if not the most important things in our world and is unfortunately sorely overlooked in this sixty year old healthcare system that was developed while we still had rationing... times have changed and chronic conditions now abound. Our health service free at the point of need and envy of the rosy bespectacled world needs to change.
We're living longer but there seems very little debate about the quality of that life. Harold Shipman perhaps took it too far but it could be argued that family GPs up until the entry of the pharmaceutical companies and their desire to grow market share had a handle on their flock and couldn't/wouldn't waste thousands on elderly parishioners when there were handfuls of babies and oyounger members of the comunity that could do with a fair crack o' the whip and perhaps some extra attention.

Whilst the bitch slapping mentioned above goes on for humans, in race horses where there is obvious money to be made or lost this vet article mentions the ill effects on 'sport horses' of jugular vein occlusion. No question of whether the condition exists.

I'm not quite sure where this link came from  (these blog posts don't follow a straight path from conception to completion) but it sort of neatly illustrates how someone with an ill defined incurable condition needs to read lots of stuff and try lots of stuff to find a way through their own predicament. Holistic rules: believe in yourself and question EVERYTHING else and begin to enjoy the process of de-stupidification!
All healthcare professionals have different priorities to us. After all, they can close the door on our condition at the end of the working day.

holistic's not a dirty word

it seems neurologists' specialism stops them asking why blood's swilling around depositing iron in the first place. They aren't able to take steps back from their microscopes. There was an interesting experiment into how eastern and western people 'read' a picture in front of them. We in the west saw a fish whist a more eastern appraisal noticed and mentioned the rocks, sand and weed in the background.

Western science doesn't appear to encourage taking steps back to get a better understanding of a fuller picture of the human body in all its complexity but moving beyond reductionism and applying holism to the human body would seem to me to be a good idea.

• Daisy Zoll Not being a scientist I cherry pick the data and pick out the bits I find interesting (let's not discuss GSK et al today!) I was interested in the fluid dynamicist a couple of years back pointing out (or what I chose to remember of what he was saying), we're a sealed unit and 'wonky' flow somewhere will affect elsewhere. From a patient's point of view I find drilling down deeper into the vagaries of your own personal bloodflow a bit like counting angels dancing on the head of a pin. How can we get some basic hypotheses tested to see if we can move this quagmire along a little? Mr/Dr Arata , what do you see as being the shape of the next steps to take from what you've seen in your practice?

  about an hour ago · Like
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  Michael Arata Fundamentally we are a collection of chemical reactions. Environmental input may alter those reactions. SNP's vary each individuals ability to respond to these environmental stressors. The more we understand about the uniqueness of each individual the better we are able to assist the body in returning to balance. The autonomic system is at the core of the response to environment. Perturbations lead to complex disorders so no one "therapy" will correct it. Rather a patient and consistent effort to restore balance, preferably tailored to an individuals polymorphisms is best. That is my view. Michael is fine 

  54 minutes ago · Like
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  Linda Rousay I will spare everyone my synopsis of the thread. After numerous brain storming sessions with my circle of physician types I deduce that there is not a common denominator with "MS". Therefore the currently accepted definition of Multiple Sclerosis is as inherently flawed as the autoimmune theory.

  46 minutes ago via mobile · Like · 1
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  Daisy Zoll ok Michael, thanks for response so can we take from what you say that double blind placebo controlled nonsense really isn't at all a useful model in treating ms let alone whether meaningful conclusions can be drawn from EAE...ie. it's flawed/we're f**ked from the ground up?

  43 minutes ago · Like
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  Michael Arata Nicely distilled daisy 

  42 minutes ago via mobile · Unlike · 1

(SNP sympathetic nervous system?) this post has been hanging around since the summer, I think.

I imagine there'll be many terms I've used in error but the basic premise of this post is to 'take a step back' (it's not the same as a backwards step)!

I signed up to Open2study the australian university's free online taster classes to encourage people to sign up to their paid for offerings. I'll let you know how they go.



these classes have been going great:
teaching adult learners
basic nutrition
anthropology *
human physiology: the body as machine
introduction to psychology

* he's a really good communicator and totally gets past the fact that it's a one way process with no interactivity (although there are evolution models to change variables on and run to get different evolutionary outcomes). If you feel like a bit of extra learning then I can't recommend this course enough

The human physiology class is pointing out to me the huge space for variation there is in the day to day running of the human body and I now feel a bit more aware of what Michael's been saying.

this is a slightly confused and more than likely confusing post but that's the way we perhaps need to look at aspects of the functioning of the human body... from lots of different angles?

Linda and Michael, I haven't sought your permission to reproduce your words here but as noone seems to read this blog I thought it might be ok, thank you both for your understanding

awesome

I was watching this clip and marvelling at the huge power held by the sea and admiring those who can comfortably and relatively safely engage with it.
Sometimes it can be easy to feel swamped by MS and as out of control as this surfer can appear but I believe we can get to know our condition in the same way as a surfer reads the sea.
We don't need to carry an underwater camera but it could be argued there's some overlap:
The water is monstrously powerful but there is a certain amount of predictability to its power (by saying this I don't mean to detract from the calculated risks surfers and other adventurers who can read the sea take every time they read the waves and anticipate the break). Rather people living with a chronic, degenerative health condition also need to succumb to a power* greater than their own.


But, I imagine surfing is a bit more exhilarating!

Having said that there is a 'zone' to be found and unconsciously explored when you find the sweet spot between just enough exercise to energise you but not so much that it wipes you out or pushes you off balance.
Paying more attention to all the different cues can bring a certain joy.
It's hard to know sometimes if the sea or the performance of ones own body delivers more or less manageable predictability.

* I'm not talking god but whatever floats your boat. I prefer to stick to known things (proven either to myself or a large number of others)
It'd be great to hear other people's reading of their situation, what are your thoughts?