Life, the Universe, MS & Me


I need help
August 21, 2011, 10:54 am
Filed under: Uncategorized

Hi. Long time no write. Technical and health difficulties.
Anyways, right now I need a car. I only drive autos. I don’t work full time so can’t get credit.
If anyone has any ideas they are gratefully accepted.

I’m just getting so tired. It’s difficult walking to work and arriving exhausted.

😦

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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



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