Life, the Universe, MS & Me


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/

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5 Comments so far
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Look forward to future updates! Love xx

Comment by TheMagicOfMedicine

[…] MS and Vulnerability […]

Pingback by MS and the media « Life, the Universe, MS & Me

[…] MS and Vulnerability […]

Pingback by CCSVI and the Liberation Procedure « Life, the Universe, MS & Me

The role of venous drainage issues in neurodegenerative diseases is not new. I have been writing about it for well over twenty years now. What’s more, MS is just the tip of the iceberg and aging baby boomers like me, and neurodegenerative diseases are the iceberg. Zamboni’s theory is similar to mine but has flaws in that it fails to explain the demographics of MS, which I cover I my blog. Nor do I believe that fixing venous drainage will heal cases with multiple and advanced demyelinated tissues. You can’t cure blindness after glaucoma has done its damage and acute angle glaucoma is associated with venous drainage issues in the eye.

Comment by Dr. Michael Flanagan

Thanks so much for you comment. I always appreciate them. Esp. as I am merely a patient trying to find my way around things best I can xx

Comment by helen1984




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