Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

kenneb9 · Posted: Thu Jan 14, 2010 8:46 pm Post subject: pms

sorry to bother here but can someone help me. I have pms stuck in my out box and can't seem to figure out how to get them sent.

dlb · Posted: Thu Jan 14, 2010 9:00 pm Post subject:

kenneb9,

Took me awhile to figure this out too, but I think they stay in your outbox until the recipient reads them. Then they are in your sent box. If you glide your cursor over the icon to the left - it says some thing like "unread email" something to that effect
Deb

eve · Posted: Fri Jan 15, 2010 4:52 am Post subject:

Coming back to DLB's post concerning skinissues...I have a contious peeling nose for years now! So all my extremities so to speak are cold and have skinissues. Also my nails are getting worse. This could be down to psoriasis but like I said, supposedly it is odd I do not have any other parts of my body effected.. Also when I suffer from relapses my skin gets horrible acne while normally my skin is clear.

Anyway, I have scheduled an appointment with my neuro on feb 18th. I have read on the Dutch forum that someone else went to a collegue of his at the same hospital. He had not heard of ccsvi yet but he was excited reading the printouts and said he would look at them with a vascular specialist and radiologist and see if they could scan. I have not heard anything since then but I sure was encouraged reading it. My neuro was never a big fan of any treatment he had to offer so I think he will hear me out.

Sure hope Buffalo will have their results by then. Thank you all for all the info on this forum.
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dx 2002,RRMS, suspected begin of MS 1978 (age 10)

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 3679

eve, i have skin probs too and am working on them but they improved dramatically with zinc deficiency correction. i'm still trying to figure it all the way out. my nails react to supplements too but i am not sure which one or ones in particular - i just know that if i slack, nails get bad and even start to separate from the nail bed. if i take all my stuff, nails stay smooth and stay on. what all that has to do with CCSVI, i have no idea.

Squibbles · Newbie Joined: Jan 15, 2010 Posts: 3

Hi Everyone

I'm new on here but have been suffering from MS since 1988!! Anyway, the reason for me joining this sight is to find out more about CCSVI - you all seem a very knowledgable group of people!

I've read the posts with interest and personally I can't wait for NICE (UK) to approve the treatment as time (for all of us) is running out.

So, would anybody be able to give me the name & phone number/email addresses of doctors that are currently practicing the treatment for CCSVI?

Thanks! Smile

kenneb9 · Posted: Sun Jan 17, 2010 7:26 pm Post subject: venous angioplasty

More reasons to go directly to vascular surgeons. They have been performing
venous angioplasty.

Also, We need to know how common a procedure venous angioplasty is among patients with other venous conditions and how successful the procedure has been searching this subject I found the following two links.

http://nih.kramesonline.com/3,S,85547

http://www.rctradiology.com/venousaccess.html

Perhaps more people can search this subject and find symptoms that have been treated successfully for other patients that mirror symptoms that MS patients have.

acol · Posted: Mon Jan 18, 2010 5:12 am Post subject:

Hi Squibbles

Welcome to this marvellous site. I joined in early October and there is a wealth of information for you to read. A good starting point would be to look at some of the Sticky threads at the top of the page which lists the sub-topics
http://www.thisisms.com/forum-40.html

You may then wish to have a look at this thread which deals with the first UK procedure http://www.thisisms.com/ftopicp-71411.html#71411

This thread will also give you a good idea of the work which people are doing to try to bring the procedure to the UK http://www.thisisms.com/ftopict-9366.html

If nobody takes any direct action it could be years before NICE approves this treatment - if EVER! There are huge hurdles of bureacracy and vested interests to overcome before CCSVI is commonplace - especially in the UK.

However, don't be disheartened. The information is available to make changes.
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Nigel

kenneb9 · Posted: Mon Jan 18, 2010 5:09 pm Post subject: CCSVI sumamtion

excellent blog post summation and links http://wwwmsviewsandrelatednews.blogspot.com/

acol · Posted: Mon Jan 18, 2010 5:21 pm Post subject:

Hi kenneb9

I am sure that your link will provide very helpful information. However, as a word of warning I would not get too excited about getting help from interventional radiologists - certainly from a UK perspective. I think that Wobbly1 went down this road on another thread and e-mailed the National (or was it International) society with no good result. I e-mailed one of its members - Professor Andreas Adam, but never got any response.

Others may be more fortunate than we were but dont hold your breath....
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Nigel

acol · Posted: Tue Jan 19, 2010 5:28 am Post subject:

I checked back. Wonky1 e-mailed the British Society of Interventional Radiologists http://www.bsir.org/content/Default.aspx on 28 October. As far as I am aware nothing resulted from this contact - certainly not from my enquiry. You could always ask Wonky1 for clarification. Personally, I thought that his approach stood more chance of success than mine.
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Nigel

kenneb9 · Posted: Tue Jan 19, 2010 3:33 pm Post subject: CCSVI Case

Follow a CCSVI case AT http://iamsickofms.blogspot.com/

acol · Posted: Tue Jan 19, 2010 3:47 pm Post subject:

Hi kenneb9

An interesting blog to follow. I e-mailed Ginger the other day and we both celebrated the good news of receiving firm dates from Dr Simka for this March. We may well meet up then but at least I will be a bit more informed of her situation. I may even recognise her!
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Nigel

taxi · Posted: Wed Jan 20, 2010 12:08 am Post subject: Speaking to our GP

Hi folks

Second post so I will quickly say hi and thanks to everyone who has gone before my wife and I. My wife has had MS for a few years. I am truly grateful for everyone's input in this list and of course to you folks who pushed so hard to go first. I feel like I know many of you - maybe one day I will. Cheer - I am a great fan of Monk and admired the music long before I knew about Jeff. Very Happy

We are keen to have my wife tested for CCSVI here in Melbourne, particularly since we're probably travelling to Europe next year. I've read many people's issues about getting medicos to listen to us about CCSVI, so my plan is to try to do this get our GP to be a champion for our cause, rather than going directly to IRs or vascular surgeons - at least in the first attempt. I believe that if I can get a GP to champion our cause then the wheels of progress may turn a little easier. I think this will be a lot easier given the groundwork that's already been done.

What I think is missing is few pages describing the research in terms that the GP will understand - to demonstrate that there's 30 years of vascular research on MS, to show that Zamboni is a respected researcher, to show that the theory is scientific (ie testable) and to show that the results, while remarkable, have also been independently reproduced.

To this end I've been working a a "white paper" about CCSVI, specifically oriented towards my GP. My plan is to email this document - no more than about 3 pages - to our GP to try to hook her interest, and then go discuss it with her in person. The idea is that she can read this in 10 minutes and become convinced - rather than having to invest in reading the research up-front.

Does anyone here think this is NOT a good idea?

Much of what I have written is from memory so there are plenty of bits where I need help finding supporting documents (ie stuff I know is true but I can't remember where I heard it). If anyone's interested in helping then please PM me with your email address and I'll send you a link to it. If I get a good response then I'll make it available to anyone who wants it.

Thanks again to all,

Cheers
Mark

Alit · Newbie Joined: Jan 20, 2010 Posts: 2

please could you tell me how I can get this treatment where do I go for the operation.
thanks

christophelux · Newbie Joined: Jan 25, 2010 Posts: 8

it seems that poland Katowice (Dr Simka) is the only place active right now in CCSVI operations. Others will do it soon but only on clinical trials.