Life, the Universe, MS & Me


CCSVI and the Liberation Procedure
December 8, 2009, 3:01 pm
Filed under: Uncategorized

This has been a hot topic in MS circles in the last couple of weeks. Many papers have been posted based on a small sample study based in Italy, which is leading to further tests in many other countries.

 

The problem for your average person is that we are given interpretations of these papers and everybody seems to be taking what they want from it. So, is this the new hope that we are promised or is it another one of those that pops up for a while and then gets forgotten again, a hope raiser that soon disappears.

 

Essentially I think that in some ways it is too early to tell for us lay people however, I think that anybody with a long term illness owes themselves a favour to really look into things before we leap on the band wagon.  Towards this end then, I will try and gather together some of the arguments in an attempt to find the current position on it. Its only when you put the bits together that you can see the whole picture.

 

First it is best to look at Dr Zamboni’s original paper. If you wish to do so please look here (but make sure you have your good eyes and brain in), essentially Dr Zamboni suggests that iron deposits around the veins in the neck and chest restrict the blood return to the heart causing reflux into the brain. When this was got hold of by the randomness of the internet and hailed widely as the best thing since sliced bread and everybody wanted some. I believe I shall call this ‘hope hysteria’; there is no other description for it. One paper does not a cure make. Even in his paper Dr Zamboni ends with this;

 

 

Finally, an additional possibility could be related to the side

effects of MS drugs on the venous wall, although these have never been reported.

The hypothesis of venous malformations of congenital/

developmental origin associated with CDMS seems to be

plausible. Nevertheless, additional longitudinal studies are

necessary to confirm this hypothesis, as well as to understand the contribution of chronic insufficient venous drainage of the CNS to the process of inflammation and neurodegeneration.

Finally, on the basis of our study, we propose the introduction of the ECD-TCCS protocol when a patient presents the first acute episode of demyelinating origin, mostly involving the optic nerve, the so-called clinically isolated syndrome (CIS).

Currently, only longitudinal clinical and MRI observation in

time and space is capable of establishing the possible conversion

of a CIS into a CDMS.

 

 

I think it is also important to remember that with this trial in Italy is that the sample numbers were very low and also that many of the MS patients were still continuing with their DMDs (disease modifying drugs), the outcomes therefore are not certain, or as certain as they could be.

 

Now from here we can say that his findings are interesting, but not a be all and end all. At this time I believe that trials are being set up in North America and the UK to test his findings, and that is how it should be.

 

Now I would like to make a point on the Liberation Procedure (seriously stupid name, I mean really, who does this guy think he is). Lots of places are saying it is easy. As I understand it involves inserting a stent in the veins of your neck or chest depending on where they decide you are bunged up. They do this by feeding it up through from a vein in your leg and up through until they put it in your jugular or where ever. How easy and safe does that really sound? So before we all jump in line for an untested and frankly scary sounding and unproven procedure maybe we should consider our own personal circumstances and if we believe we have really run out of options to that extent.

 

In everyday instances we must look for explanations of difficult scientific work from somewhere. We really do have to be picky about the sources of these, do not except a random article in the general press, neither should you except some random bloggers thoughts (including mine) but what we should look at is the thoughts of those bodies that know about or condition, have our interests at heart, pay for research and also help us in our everyday lives.

 

In the UK we have two groups who should be looked to for advice before any others, I believe. The MS Trust and the MS Society do us all a marvellous job in keeping us up to date and are broad minded and balanced in their approach to things.

 

The Trust has a couple of small pieces on CCSVI, but as it is a new thing you cannot expect more. There main comment is as follows; and can also be found in full here;

 

Dr Mark Freedman is director of the MS research unit at The Ottawa Hospital, Canada and a keynote speaker at the recent MS Trust annual conference. He was questioned about the new theory during an education session hosted by the MS Society of Ottawa on Tuesday night (24 Nov). He was sceptical about the “liberation procedure” which he felt was based on circumstantial clinical evidence and cautioned that people with MS should not rush into getting it.

Pam Macfarlane, Chief Executive of the MS Trust said, “The cause of MS remains unknown and we welcome any work that may shed light on this. Dr Zamboni’s theory will need further investigation in larger groups before any firm conclusions can be drawn”

 

This I think is a reasonable starting point and was written about a week or so ago. These things do need proper consideration and we do need to take our lead from those who are in the best position to understand and form judgments on such issues. The latest release from the MS Society makes these points (found here);

Research Communications Officer at the MS Society, Dr Susan Kohlhaas, said: “Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject.

“They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition.”

 

And further on;

Professor Alastair Compston, Head of the Department of Clinical Neurosciences at the University of Cambridge and winner of the 2007 Charcot Award for a lifetime achievement in MS research, is one of the MS Society’s six medical advisors.

He said: “The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.

“People with MS are unlikely to benefit from treatments that dilate blood vessels.”

 

It could be that these studies to help us understand MS. I don’t believe this represents the end of the story where CCSVI is concerned. Research continues and even if it does not lead to a cure or treatment it could still well be beneficial. It is also worthwhile to note that just because there is no convincing evidence now that there may not be in the future. The completed trials are small and Dr Zamboni does admit that there were limitations which he lays out in a more recent paper (skip to the discussion at the end if you don’t like numbers). We will have to wait for something more representative.

 

As I said at the beginning I do think we owe it to ourselves to understand as much as we can about our illnesses, they can be with us for a long time after all. It is important I think that we become ‘expert patients’ to look at everything from a distance see both sides, and also only to take our information from trusted sources. It is imperative we learn to get our facts straight in order to help ourselves.

 

see also;  MS and Vulnerability

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MS and the media
December 4, 2009, 6:00 pm
Filed under: MS

How things are represented in the media effects public opinion of them. That is something reasonably obvious to people who live in today’s society. They way that people think of MS is therefore fairly critical if we are to be able to live the way we need to within this society.

 

My alter ego is another example of how things are portrayed. Archaeologists are viewed within the frame of mind of people who have watched Indiana Jones, Lara Croft and Time Team, essentially we are pretty cool and like a bit of drink (bullwhip optional). That’s all fine apart from when people what you did at Uni and you tell them and they say ‘that’s interesting’, I have yet to find an appropriate response to that (normally go for ‘it’s like Lara Croft but with slightly fewer guns and a bit more paperwork’. Though I am tempted to give them a lecture on Langdale axes, prestige goods distribution and inferring cultural taboos from the evidence).

 

MS also has films and TV. Its one of those diseases where, if a famous person has had it than they make a film. Well it does tell others about our condition but, inevitably the people they have made programmes and films about tend to be in the minority bracket of MS’ers. Those that have a quickly progressing form. Ok it makes for a great story, as a representation though it reinforces the view of MS in the worst case scenario.

 

Is this a bad thing? What is wrong with people thinking we are all going to turn into such a state? Well it does mean that people cannot respond to us at the level we need. If they purely see the illness as an outwardly obvious physical condition how can we help people see that the vast majority of us are not and will not look like we are ill. At the same time if people are not aware of this then it will be difficult to elicit the appropriate response if we require assistance. This is particularly meaningful in the work place or amongst friends and family. The point to get across being, I may have these specific problems at the moment, but I am not going to slide downhill overnight and I would like to still be seen as a useful human being.

 

The worst thing I have ever seen on TV though that practically made me cry were some appeal films during Comic Relief. I know they are trying to help.  You know the ones were they show kids helping with they’re MS’ers parents (parent usually and single mother most often). Those ones that say about them using some of the money to take them on holiday. What particularly hurt was that it made me feel guilty for even thinking that one day I might want a future. It made me feel selfish for even contemplating the idea. Well next time I will close my eyes and stick my fingers in my ears, I’ll be damned if I’m letting it take any other possibility from my life, it feels like its had enough already.

 

Well now, I hope this won’t make me unpopular but I think its time to talk about celebrities.  I am actually mostly going to talk about Montel Williams. This may sound harsh but I hope it has a point. Now Montel as we know is an internationally know figure. He could be a force for good, for helping people around the world get to see the truth of our illness, whether he likes it or not given his profile he could be seen as somewhat of an ambassador. Montel has spoken of his illness a lot on his talk show; he was one of the first high profile MS’ers I heard about after being diagnosed. I spotted him whilst channel hopping. The thing is I think in some ways he is being a bit of a hindrance rather than a help. Partly this view could be because I saw him crying about it and it was only two weeks since my diagnosis.

 

Now I know he does has his foundation in the US and it probably does help people, but I can’t help but think that when he does choose to talk about it he could do so more generally rather than just in relation to what he feels. I have said before that every case of MS is different, with its different collection of symptoms. Part of me thinks that this grown man with millions in the bank could afford a bit of counselling to get over his emotional issues and really help.

 

What he does do though, and perhaps it is a very American response, is to tell everyone to drink copious amounts of juice, buy his fitness DVDs (I understand that Motel gets pain issues but I don’t think he has encountered fatigue yet by the sounds of it, he still goes to the gym) and his book which I believe is about defeating the illness by positive thinking. Don’t get me wrong I am all for positive thinking, it’s just that some people let that get in the way of reality. Acceptance of reality is important; you have to accept something as a problem in order to deal with it. I guess this can be linked slightly to my previous post on vulnerability, https://lifeuniversemsandme.wordpress.com/2009/12/01/ms-and-vulnerability/, why would you do that to one of your own.

 

Now I think some of my issues with those with fame and portraying there illness is that they are usually settled in their career before they get ill. I will admit to being a little jealous sometimes of people who have their life sorted out before they get ill and already have a house, a career and a family. I think it must be so much easier. I have said before that I started getting ill as soon as I left Uni. I have none of these things and they seem like they may be a struggle to get to. I don’t have the energy to work full time so maybe some of these things ill never be. Maybe that’s why I think Montel should stop crying. He had his life set up. I have a massive student loan and an overdraft on my graduate account that is no nearer being paid of than it ever has been. And I’m back in the box room. Envy is probably very bad.

 

We have to see how people view it. Is their view that MS’ers have no problems at all and can cope with these jobs, well again it depends on your personal MS. So that people see not just the worst case scenario, and not just these media types crying on TV and advocating alternative remedies (in some cases), they should be made aware of the reality of the normal average MS’er (for all that there can be one) to enable us to live better. And those with access to worldwide media ought to highlight issues that the rest of us deal with.



A poem that I wrote back on my 1st MSiversary.
December 3, 2009, 6:59 pm
Filed under: life, MS

My Invisible Friend

Seeking concentration in the fog
Lingering in space
In depth of nothing
A place to exist
An unknowable place
Am i neither in one state nor the other?
Between life and oblivion
I am defined by
Tethered by
Held by
Feeling my way with my new friend
Finding the path
Aching so as to feel the bones in shape and form
Pain shooting to numbing fingertips
No wish to be sufferer or victim, fighter or survivor
Fear – a certain uncertianty
A new road in the mist
Difficult to comprehend
Energy
Propelling force
Unwinding
Stopping
Snaps and gone
Why should i complain?
Others have passed this way
Invisable friend leading them blindfold
Such a rocky land
The way becomes harder
But there are others in the distance
Heading towards the cliff face
My friend or enemy
Constant attendant
Constant battle



About MS for those of you who don’t know
December 2, 2009, 7:05 pm
Filed under: life, MS

I realise that some of you reading this blog are non MS’ers who don’t really know much about the condition. I will now endeavour to explain something about it, but bear in mind that some of this is from my point of view. Everybody’s MS is different. Also if you are an MS’er please feel free to add things in the comments, I am relatively new to it so I don’t mind if you want to point out anything I have missed or said in error.

 

When you get diagnosed you tell your family and friends what it is, well they ask you, but at that point you don’t necessarily know yourself. It can be difficult when most people’s perception of the disease is the worst case scenario.

 

I am also going to steal some of my information from the MS Trust website to help me phrase what to say slightly, they do a marvellous job and you should give them money → http://www.mstrust.org.uk/fundraising/  

 

 

So, where to start, well I suppose I ought to tell you that MS affects young people. Generally its early twenties to late forties but it is known for teenagers and older people to be diagnosed too. I think in the case of older people it may be that the diagnostic tools were just not there when they were young; it is much easier now, what with MRIs and such.

 

I was diagnosed at the age of 24, at the end of May 2008; I have said in previous posts that diagnosis did take a while. MS as a possibility was first mentioned to me in January of 2007 when I was 22, having gone to the hospital when I had an episode of optic neuritis.

 

MS is, according to current theories (there is another in the pipeline), an auto immune disease affecting the central nervous system (CNS). So what happens, well it is thought that there is a group of genes that predispose people towards MS and that these can be activated by environmental factors such as a virus, which can make the immune system attack the nerves.

 

Nerves are covered in a fatty substance called myelin which protects them and has been likened to the covering on electric cables. This is the part of the nerve attacked by the immune system causing de-myelination. This means that the way messages are carried to and from the brain may be disrupted. Where this damage occurs and scarring takes place, relates to which symptoms occur. Above I said that I had had optic neuritis, in that case the optic nerve was the one affected. In relapsing remitting MS, which is the most common kind, the myelin can repair, partly repair or messages can be re-routed around the scarred area (this is the remission).

 

That was the science bit. Now for real life. My personal MS and the symptoms I have experienced will be different to what other MS’ers have experience, the brain is actually a big place so where the scars are will be different in mine that other peoples.

 

I have had optic neuritis a few times twice in the left and once in the right. They are what I would describe as almost entirely better, there is a little residual affect and sensitivity to bright light. I also have a residual affect of when I feel a pain in my eye I wonder if it’s coming back again but luckily it hasn’t for a year or so.

 

My main issue is with fatigue. It’s hateful in both its physical and mental guises. Unfortunately like many other symptoms it is invisible. It is an overwhelming sense of tiredness that goes beyond what most people who say ‘god I’m knackered’ will have experienced. Really you don’t know the half of it. To be physically exhausted is one thing, but I found the cognitive issues associated with the mental side of fatigue slightly worse. I have sat at the till at work on several occasions and people have handed over their money and I have looked at it and thought, ‘what’s this I know it means something’. Ok, so it may have only lasted a few seconds before I sorted myself out, but it was damn scary that I couldn’t work out something so ingrained in our lives. At Uni I read a book called ‘The Meaning of Things’ I understand the intrinsic value that objects have, its frustrating.

 

Still it wasn’t as bad as the conversation I had where I didn’t realised until afterwards that every time I had intended to say yesterday I had said tomorrow. Shame I was being told off at work at the time because some numpty forgot to write down that I had a hospital appointment.

 

Ok so I have tablets that help stave that off now. And to say I loved them for existing would be an understatement.

 

My other issue is with pain. Until quite recently MS was considered a painless condition. How, I don’t know. I get pain in my hands often this is called I believe neuropathy; I have also had it in other areas. I have pills for that too, I am only on a low dose so I do get a bit of break through pain occasionally during the day. Its manageable but can take me by surprise. I have lately had to increase it though because of a burning sensation around my ulna nerve. Still it’s good I have somewhere to go with them if I need more.

 

Other than this I can get cramp and stiffness and have a few twitches. These are my day to day problems. I have had other things in the past too. I do the best I can.

 

Please feel free to ask me questions, leave comments or tell me I have it all wrong.



How Derren Brown Saved My Mind (or how I met a group of lovely people on the internet and regained my thought process)
December 1, 2009, 12:27 pm
Filed under: life, MS, Thanks

OK, so the title is not strictly true so before you think I am very mad let me explain….

When I left university with my shiny new BSc (hons) Archaeology I had a plan. It was a good one too. Two weeks until jury service, two weeks of jury service then, go digging. Have tent and trowel, can travel. Beautiful. Actually in the summer of 2006 there was a gas pipeline being laid through south Wales, there were many companies involved in the rescue digs as they are called. Investigating and retrieving evidence before it is destroyed, to enable preservation by record. I was going to get myself in on it.

Then in the intervening two weeks before jury service, I was sat watching TV and noticed that I had pins and needles in my left big toe, very odd. Anyway over the next few days it ended up on both sides and extending to the bottom of my ribcage. It all went numb. The GP told me I was fat. Nice.

This lasted until the end of November, I didn’t apply for a job, my hands were numb too, and having a stumbly person with a tendency to drop things on a site is not really welcome. So I started looking for a job when it went away. And I found one, they ere still doing the pipeline but the portion was not starting until the end of January and was not taking applications till after crimbo. Well that was fine with me.

At the beginning of January I went into my old work and asked about getting a reference. They said they would and also said I could go back for a month until the new job started, well I didn’t know if I would get it yet, so a back up plan is a back up plan and I was back in the shop. Then my eye went funny.

I could not see lights or red. And it had gone misty, the GP referred my to the eye unit. The ophthalmologist said I had a chance of MS and I needed to see a neurologist. This was January 2007. I realised that I would not be able to get away for my digging job. I realised I was stuck in a small town where everyone had small town ideas. I didn’t think like them anymore. Uni had been truly mind freeing. I didn’t tell anyone what they thought I had I just went for tests. I was getting more and more run down and tired. I was taking on to many hours in the shop and being made to feel guilty if I didn’t.

Over the next 18 months I had two MRIs and a lumber puncture before they diagnosed me. I was very low. I felt like I couldn’t talk to anyone properly. I was essentially wallowing in my own melancholy. It was the end of may/beginning of June 2008 when I got the diagnosis. Work was particularly unsympathetic. And it got even lower. This year my patches of confusion (related to my mental fatigue) had got worse and I had had to ask the neurologist if he could help me. So it all came about at once I guess. I started taking modafinil, which helps enormously (well I haven’t forgotten what money means in the middle of the day lately and i manage to stay awake past 4PM), and Derren’s events programmes. So I looked him up on twitter. I had had twitter a little while so that I could get research updates from the trust and the society but I had also found some MS’ers to talk to and they did help to some extent with what I was feeling, because some of them are more advanced than me though, I do find some of what they say a little harrowing sometimes.

So then obviously I found the blog. A little seam of loveliness in the blogosphere, I said in my first post that I felt like I had lately crawled out of an abyss. Well I think this was my lifeline. I managed to settle back into myself and slowly find my ability to think again. I had regained my rationality and found some sensible people to comment amongst (well I do think some of you are a bit weird but that’s ok).  I am so glad that I played that ARG with some of them. You don’t realise it but you nutty, funny, intelligent, random, lovely weirdos helped me find my mind again, in my head at least I very nearly feel my own self. I am out of the abyss and my mind is awake again.

Thanks xx

(Sorry Derren you didn’t save my mind, it was the Brownian Army, and you should feel lucky to have such amazing followers.)



MS and Vulnerability
December 1, 2009, 11:06 am
Filed under: MS | Tags: ,

Today i have been thinking about how people with MS can become vulnerable.  Actually i have been giving it thought for sometime.

By being vulnerable i don’t mean the vulnerability that can come with some of the obvious aspects of  our condition such as the mental and physical things, but rather the vulnerability that can come from a need to make ourselves feel ‘better’ or at least more normal.  Also the continuing hope for a cure that my possibly lead us down paths that are not necessarily good for us purely on the basis of this hope. i believe it is a powerful thing.

I think that because we are incurable and are trying to manage our symptoms, particularly those otherwise unseen by others, we can be prey to those who wish to tout their latest idea and claim to help us feel ‘normal’ or in some cases cure. Does the hope we feel leave us more vulnerable to taking these things on, does it in fact make us lose our rationality. i think in some cases it might.

We know that even some of the traditional medicine we get is not tested for our condition and while it is found to work for some of us the numbers maybe small. We try everything until one works. Mind, though, that they are not prescribed unless they have worked. i know that one of my medications only works on 36% of MSers. 36% is better than nothing and i find it works for me and obviously i am grateful.

MSers, we know that every day we can hear of some new theory or treatment that claims to help. i am almost certain that if we do manage to look at these things rationally we may find that most of them do not add up. We strive for things that will make us feel better, we clutch at straws. We should i think try and lay aside the emotions we may feel and see if these straws might actually be attached to something solid.

Lately we have been offered new research from italy in the shape of CCSVI, if you haven’t heard of it yet (unlikely) it is a supposition that MS may not be immune related but in fact be caused my constriction of the veins in the neck and chest that drain blood from the brain. It is being touted by some who have got hold of it as leading to a cure the so-called liberation procedure. The links with MS, according to the society’s of the US, Canada and the UK, have not yet been proven. Some people have criticised them for saying this. I don’t. They also say that they support the research and that they do not wish to say one way or the other whether they are going to promote it.

I think that some times it is best to have the courage to say ‘you know what? i don’t know yet’ . in some cases not knowing what to think may in fact, be the correct response. i think this is one of those times. we don’t know, so lets not get over excited but support the research.

Yesterday the UK Government had a discussion on homeopathy and its labeling. this is leading to much discussion in this country. As MSers do we rely on alternative treatments too much because traditional medicine fails us? Do we fall into the ‘you can get yourself better in one easy step if you part with £s and buy this book’ trap. In desperation i think that some people may do. It’s this that makes me feel vulnerable. that i am being battered on all sides by people who claim to be able to make me better. what if one day at a low ebb i lose my rationality and succumb to something that at this time i would declare as nonsense put about by nutjobs.

But then if it does make you feel better…

Come on now, we know a nice lie down can ease our fatigue and pain a little. Wouldn’t that be a bit cheaper than aromatherapy or acupuncture?

http://www.mssociety.org.uk/research/az_of_ms_research/cd/ccsvi.html

http://www.badscience.net/2006/01/homeopathy-someone-should-tell-the-government-that-theres-nothing-in-it/



Life, the Universe, MS and Me
November 30, 2009, 6:33 pm
Filed under: Uncategorized

Well, I suppose I had ought to write a rational for starting this blog.

I suppose the main reason is to get things out of my head and into a reliable format. I often find that with my Multiple Sclerosis issues raise their heads about which I feel the need to comment but don’t have a reasonable and rational outlet. Whilst this blog may have a lot of content related to my condition I do intend for it to be more wide-ranging. My background in archaeology gives me an interest in humanity, life and the universe and hopefully my blog will reflect that.

In some ways I hope that it will allow me to regain some aspects of myself that had seemed lost in the fallout from my diagnosis.

To be truthful, in some ways I feel that at the moment I have just dragged myself out of the abyss and am regaining my mind. Perhaps some of that is drugs, but more on that at a later date I’m sure.

Thank you for reading,

Helen xx