Possible life changing news for Multiple Sclerosis Sufferers.

Alan_M_2

As some of you may be aware Mrs M has Relapse Remitting Multiple Sclerosis.

We've lived in a state of resigned acceptance that this is as good as it's going to get and Capoxone (a drug she's just started may help stop the progression somewhat).

However, very recently the MS world has been turned on it's head buy the idea that Chronic Cerebrospinal Venous Insufficienecy (CCSVI) - or a narrowing or blockage of the jugular arteries is responsible.

Treatment is available in Poland now (the Professor that theroised this is Polish) and it looks like it's coming to London vis private clinics see Here:-

CCSVI Information - CCSVI

However in the meantime I'd be terribly grateful if you'd all sign the following petition to make the government address this new treatment.

Thanks all.

Petition here:- Petition to: To make CCSVI procedure available in the UK. | Number10.gov.uk

LindsayO

Alan, thanks for posting this, like Mrs M I also have MS. I think this looks very encouraging, however there is a downside. The treatment involves putting a stent in a major vein. The two possibly fatal sideeffects are 1. if the stent breaks lose it will head straight for the heart. Stents that are placed in arteries are not nearly as dangerous as they carry blood away from the heart and so if they break lose they travel further down a limb for example. 2. The operation is very close to the brain and so if things don't heal properly there is a danger of brain hemorage.

I'm not trying to be negative or push the wind out of your sails, it's just people need to be able to weight the pluses and minuses and the treatment is very new and experimental.

Oscar_The_Grouch

Good luck to you and Mrs M, Alan. If I were you, I'd join Twitter and send details to as many celebs as you can. Stephen Fry is one of the most well known UK tweeters who also suffers from a disability (bipolar) and follows good causes. Alan Davies often gets involved in things too, as does Phillip Scofield (Scofe on Twitter).

The problem with Twitter is that you only get 160 characters to put in your message. Your URL to the petition is HUGE!! Try shrinking it here:

http://!!!!!!!.com/ Edit: How silly!! They don't like my link!! It's "www dot tiny url dot com" with no space between "tiny" and "url".

You copy and paste the URL into the required box and either leave it to generate its own new version or give it your own name. I'd go for "CCSVI" so it came out as:

www . !!!!!!!.com / CCSVI

without the spaces.

Why am I suggesting this? It's because many of the petitions at No 10 with the greatest following are brought to the attention of the general public by celebs on Twitter. I've signed several that were highlighted by celebs there that I knew nothing about before.

Good luck with everything. I sincerely hope that the petition is a success.

colin13

as a MS person myself,,tehy are now sayin it aint mylen sheaths breaking up etc ,,but now it is all to do with blood flow,,when someone eventually sits down and works out how and why MS occurs,I will then belive the stories,,but as we live in UK wee will be last to know as usuall

Alan_M_2

LindsayO wrote: »

Alan, thanks for posting this, like Mrs M I also have MS. I think this looks very encouraging, however there is a downside. The treatment involves putting a stent in a major vein. The two possibly fatal sideeffects are 1. if the stent breaks lose it will head straight for the heart. Stents that are placed in arteries are not nearly as dangerous as they carry blood away from the heart and so if they break lose they travel further down a limb for example. 2. The operation is very close to the brain and so if things don't heal properly there is a danger of brain hemorage.

I'm not trying to be negative or push the wind out of your sails, it's just people need to be able to weight the pluses and minuses and the treatment is very new and experimental.

There are certainly possible complications to this procedure with the use of Stents, however many of the procedures take place with angioplasty.

It is promising though, and whilst I do look at this through rose tinted spectacles, when an MS sufferer is given the possibility of a remission of their symptoms, the risks are often worth while for quality of life, That though is a decision for each individual.

LindsayO

colin13 wrote: »

as a MS person myself,,tehy are now sayin it aint mylen sheaths breaking up etc ,,but now it is all to do with blood flow,,when someone eventually sits down and works out how and why MS occurs,I will then belive the stories,,but as we live in UK wee will be last to know as usuall

I think the idea is that the blood flow problems cause the demylination. The problem with blood flow isn't that we aren't getting eough blood to the brain, it's that the blood from our brains isn't leaving it, so our brains are full of old spent blood without any oxygen it, and I think there may be something to do with too much iron (from the blood) accumulating in our brains

Alan_M wrote: »

There are certainly possible complications to this procedure with the use of Stents, however many of the procedures take place with angioplasty.

It is promising though, and whilst I do look at this through rose tinted spectacles, when an MS sufferer is given the possibility of a remission of their symptoms, the risks are often worth while for quality of life, That though is a decision for each individual.

I tend to worry that the cure could be worse than the disease.

Alan_M_2

LindsayO wrote: »

I think the idea is that the blood flow problems cause the demylination. The problem with blood flow isn't that we aren't getting eough blood to the brain, it's that the blood from our brains isn't leaving it, so our brains are full of old spent blood without any oxygen it, and I think there may be something to do with too much iron (from the blood) accumulating in our brains

You've kind of half got it.

The issue with the surgical procedure is whilst vascular surgery has been perfomed for decades, the type of surgery required for this particular procedure is unusal in so much as it's perfomed on venous viens as opposed to arteries.

This is unusual, and as such no real statistics exist on it's success.

All statistics to date for either angioplasty or stent insertion are for patients that have inherent medical problems in those areas, heart disease, angina, diabetes etc so are more prone to failure.

The idea of the petition is I'd like to see more research into Prof Zamboni's procedures.

His thinking is so far away from any current theories that it should be followed up.

As I see it, Prof Zamboni's theroy, if correct, makes a lot of very intelligent people look wrong, CCSVI if proved valid is going to cost drug companies Billions in lost drug revenues (Mrs M is currently on Capoxone at the princely sum of around £25,000 pa picked up by the NHS). There are a lot people that would like to see him wrong.

What I'd like to see is some financed quantifiable research.