Ashton Embry's new article -"CCSVI-Some More Thoughts&q

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by muse » Tue Jan 19, 2010 6:25 pm

No amount of shouting out of windows will change the fact that it takes long-term studies to determine long-term effects.
The goal now is to get high quality studies started as soon as possible. /Scut
Different people - different goals.
I’m as mad as hell and NOBODY can stop me to shout out of all my windows that I am not going to take this anymore.
I've got the diagnosis of a massive stenosis (Vena jugularis) in black & white now all done at my own expense. I have CCSVI which makes me difficulties to breath amongst other problems and I want that fixed NOW! It’s a very serious medical condition Scut and it doesn’t matter at all that I have MS as well and it doesn’t mean that I don’t want high quality studies, quite the contrary!!

Thank you dear Ashton Embry for all the great work you have done over the last decade!

Arne aka muse

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What are your goals ?

Post by MarkW » Wed Jan 20, 2010 7:23 am

What are your goals ?
I have a problem with people telling me that Ashton Embry's article is good science when to me, a scientist, it clearly is not. Having been involved with pharmacy and the pharma industry for 30 years, I advised people not to get in a rage, rather present facts. I advised people to tell their personal story of getting treated, guess what the London tabloid newpapers focussed on, yes real people. I have been shouted down for both pieces of advice. I should not care, but CCSVI is very interesting. Much of what I read on this website is counter productive. Some people are actually slowing down the dissemination of the CCSVI message, that makes me sad.
My goals are: opening up discussing with Radiologists; getting tested; having venoplasty (ballooning of veins). Afterwards I will share my experience with my friends with MS. I am disappointed that there are 50-100 people who have had good experiences with the procedure but I do not see many stories in the media or on this site, why ?


Last edited by MarkW on Thu Jan 21, 2010 11:03 am, edited 1 time in total.
Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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Post by cheerleader » Wed Jan 20, 2010 7:34 am

rough day.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09

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Post by Lyon » Wed Jan 20, 2010 8:42 am

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Post by Bethr » Wed Jan 20, 2010 1:37 pm

I find this CCSVI link with iron is critical. Which came first, the deposits of iron or the blockages in the veins. What caused what.
I have one lesion (mild), it developed a few weeks after finding high transferon saturation and ferritin levels in a blood test. I also had the signs of epilepsy on an EEG at the same time (epileptics tend to have high transferron saturation levels). I have now reduced my iron levels through phlebotomy and all my symptoms of sleeping during the day and lethargy/feeling heavy disappeared in 24 hours. Day 8 and feeling like a 25 year old.

I am a clean slate, never taken any drugs or anything, nor vitamins. Iron is the only thing out of the ordinary with me.

My sister who has MS too, but much worse, shares the same iron overloading gene with me H282Y. The genetic link, both overloading iron, both with MS.

Me, miraculously fixed for the moment :D My sister, keep posted, as this has all developed over the past few weeks, she hasn't reduced her iron levels yet. Her ferritin is over the recomended range.

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