UK MS Society

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

UK MS Society

Postby LR1234 » Tue Nov 24, 2009 3:33 am

Nice to see they are reporting on CCSVI and including the CTV links.

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944
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Postby HelenMSRC » Tue Nov 24, 2009 5:37 am

Hi,

Just to point out that the link is NOT from the UK MS Society, but from MSRC (Multiple Sclerosis Resource Centre). MSRC is taking a very keen interest in all reports with regards to CCSVI.

Thanks
Helen
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Postby Dovechick » Tue Nov 24, 2009 6:03 am

Hi Helen, nice to see MSRC represented here... Much more open minded than other MS societies I know. Pleased that you are taking an interest in CCSVI , if anything is going to happen in the UK it will need the weight of societies like yours to change the status quo...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby CRHInv » Tue Nov 24, 2009 7:11 am

That is a lot of good information in one place! I have bookmarked that one for referring people to! Thank you Helen and the rest of the MSRC!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby mrhodes40 » Tue Nov 24, 2009 8:30 am

Helen, thanks for all your work at the MSRC! I am an American but I have looked to the MSRC for good information for as long as you have been online! I see your organization as one of true advocacy for MSers and have always been grateful for you guys :D

This is going to take some push to make it get over the hump of "proven" IMHO

We'll need all hands on deck!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby MSUK » Tue Nov 24, 2009 8:30 am

Thanks Guys, as usual we will try and provide all information on this subject on the MSRC website, as and when it appears.

squiffs :D
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Postby LR1234 » Tue Nov 24, 2009 8:40 am

Thanks for setting me straight Helen and welcome to you and Squiff!!
It is great to see representatives from the MSRC joining us.

I am in the UK and am trying to get the word out to vascular dr's and neuros here (as are many of the other UKers)

We would just love them to investigate the theory further and start testing MS patients as soon as possible:)
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Postby MSUK » Tue Nov 24, 2009 8:49 am

Hi LR, thanks, I was a member here for years,but for some reason my account had disappeared 8O

Hence the Newbie status, but tis ok :D

It is an exciting time with CCSVI and we are following developments closely, as you can imagine.

squiffs :P
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MSRC et al

Postby HelenMSRC » Tue Nov 24, 2009 8:55 am

Hi All,

Thank you for your welcome, like Squiffy I have actually had an account on here for a while and regularly look at your forums where you have very interesting and informative discussions.

For those who aren't aware, at MSRC we believe (in a very similar vein to TIMS) that our job is to provide unbiased information and the "public spaces" in which to discuss such information. One of the many "public spaces" we provide is New Pathways magazine (currently on an offer of a free year's subscription if you want to try it out!)

I, personally, have always like this site as it attracts informed people who help to further inform each other.

I am sure that CCSVI is going to run and run in terms of discussion and pushing for doctors to get on board - I have no doubt you will be seeing a lot more of MSRC in the ensuing debate!

Thanks again for the welcome

Helen
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New Pathways

Postby Dovechick » Tue Nov 24, 2009 9:08 am

Several of us know about New Pathways magazine, in fact my daughter Ella has made a couple of contributions to it. One about the Combined Antibiotic protocol and one of her experience of fundraising for MSRC through her skydive. I know the Wonky1 has recently written about CCSVI for NP.
Free subscription, He! well I might investigate that.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby MSUK » Tue Nov 24, 2009 9:13 am

Hi Dovechick :D

Ella's Skydive story is on the MSRC website as well., with pics :P

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2656

squiffs :D
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Postby Dovechick » Tue Nov 24, 2009 10:44 am

Thanks Squiffs, for taking me back. Ella did do quite well on the protocol, but unfortunately severe aneamia meant that she could not carry on with it. She may go back to it when things settle down, in the mean time we are investigating this alternative.
She has been going downhill quite rapidly since off the protocol and is struggling a bit at the moment. So this is a real possibility to halt the progression.
Last edited by Dovechick on Tue Nov 24, 2009 12:34 pm, edited 1 time in total.
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Postby MSUK » Tue Nov 24, 2009 12:06 pm

The new November/December edition of New Pathways is being published this week. We have three articles on CCSVI.

1. Chronic Cerebrospinal Venous Insufficiency (CCSVI) - How To Treat It, Where To Get Treatment & New Research by Ian Cook and Judy Graham

2. Can Certain Supplements Help Tackle Chronic Cerebrospinal Venous Insufficiency (CCSVI)? by Mary Smith

3. Chronic Cerebrospinal Venous Insufficiency (CCSVI) - The start of a new era in understanding and treating MS. But will Neurologists Listen? by Ashton Embry

If you do not already subscribe to New Pathways, MSRC currently have a Free New Pathways Subscription Offer (New UK subscribers only).

Full details on the MSRC website - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2854

squiffs :)
Last edited by MSUK on Tue Nov 24, 2009 11:55 pm, edited 1 time in total.
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Postby mrhodes40 » Tue Nov 24, 2009 12:16 pm

Are all of your articles available online? I am an American so not eligible for the free subscription.

The first book I ever had after I got MS in 91 was Judy Graham's Self Help book.... :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Mutley » Tue Nov 24, 2009 12:43 pm

Thanks Squiffy, I've just applied!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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