I just met someone dx'd with CCSVI 15 yrs ago?

[euphoniaa]

I rarely meet anyone in my Real Life with MS, and therefore don't get the chance to talk about it either. I'm even in an official MS Study at work, but apparently the other area participants can't leave their homes to meet together, so the researchers have to go to them individually - and to me in my office.

Anyway, last night I was at a social thing at my daughter-in-law's house and met a distant relative of hers who has MS. It was great! We both do MS exactly the same way - absolutely wrong. And we're doing okay.

But I mentioned CCSVI. She has never heard of CCSVI, never been on the internet, never taken any MS meds, and stopped going to a neuro because he kept insisting she get into a drug trial. She only sees her GP.

But...when I gave her the short version of CCSVI (CCSVI blahblah, jugular veins, blahblah, lesions blahblah, blockage, stenosis blahblahblah...), her mouth dropped open. When she was going through lots & lots of testing 15 years ago, she was told that tests showed she had "narrowing in both her jugular veins" and that it was the cause of some of her symptoms. Then she was finally dx'd with MS.

Interesting. I wrote out the terms so she could watch for it to someday break into the news and promised to mail her some info. Just thought I'd share.
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[BooBear]

Wow! That really is something! Be sure to keep us posted.

Has this person taken any drugs at all to treat the MS?

[sbr487]

When she was going through lots & lots of testing 15 years ago, she was told that tests showed she had "narrowing in both her jugular veins" and that it was the cause of some of her symptoms. Then she was finally dx'd with MS.
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MS follows CCSVI (... what did Dr. Z say?)

[mshusband]

This story is going to sound crazy ... I don't know ... maybe it is, because I was told it second hand ... but here goes. I didn't ask, this is exactly what I was told though ...

A friend of our family (from Buffalo/Western NY area) has recently been having some neurological problems. He'd had a few seizures ... but the doctors couldn't explain it ...

Anyway, he'd been to a few doctors and they'd checked it out, and couldn't explain it. SO he went to JNI in Buffalo ... anyone want to guess what he was diagnosed with?

Yep ... CCSVI.

So here is someone who doesn't have MS (or not diagnosed with it yet) but is now diagnosed with CCSVI. I wonder if he will get treatment?

The odd thing is this gentleman is in his 70s ... not typically an age for MS diagnosis. And all these problems just started within the past 6 months. Never had any issues for the first 70+ years.

I just found that interesting ... because he's the first person I know of diagnosed with CCSVI BEFORE MS.

[cah]

In the early pilot study in buffalo, a woman who was in the control group was diagnosed with CCSVI. She got her MS diagnosis six months later, as I recall.

[Perky]

Wow, this is really intriguing!

I wonder how the problem in the lady's veins was detected (considering how tricky CCSVI is for some professionals to detect all these years later) and whether the jugular veins involved were the internal or external ones?

Edited as I was talking rubbish.

[NZer1]

Keeping in mind that the 'professionals' want to put you in a 'box' or dx.It is far easier quicker and cheaper to dx CCSVI than MS. AH but then what will they do? With pressure in the right manor you may get treated for CCSVI! This might be the way the industry is going to progress CCSVI don't mention MS and go on the CCSVI trail only. No history on record of MS for these patients.

[blossom]

ms husband that is really interesting. i can't help but feel that the resistance that is shown to keep people from getting a procedure that is relatively safe and common and happens to help ms doesn't have potential to also help other problems. look at ctos. yes, that has to do with the arteries but none the less look at the illnesses it helped. the mainstrseam medical whoevers did a number on putting that treatment under the rug. but, they did not have the internet backing zambonni has had. i'd be willing to bet that this whole blood flow thing and the possibilities it has- has a lot to do with the type of resistance we are getting. and, the illnesses that effect brain and nervous system are treated by neuro.'s and drugs. bad enough it helps ms but look at the whole chunk of change they have controled forever. if theses researchers that are already into it could be given full rein. watch out. and i feel they know this. how's that for a conspiracy theory?

[Johnson]

This whole thread is fascinating.

euphoniaa, I just gave a relative in Florida a bunch of info (and the link here) because he had been telling his accountant about moi, and the acct. asked for info because he has clients and friends with "MS". (Nunzio - get ready to field questions from fellow Floridians.) My wife and I have told 50 people, and they will tell 2500 people, who will tell about 62 million people... and we're done!

I was always dis-satisfied with "Multiple Sclerosis" - it is a catch-all, and an euphemism, and I loathe such simplicity. In 1993, it was all shoulder shrugs, grave faces and nihilism. It still is, in certain circles.

We are getting there.

[sonia52]

When I was dx'd in 1980, I was told that MS has a correlation with the blood system fine circulation.

At the beginning of 2002, I found an argentinian forum where people spoke of CTOS. Many people (1300) had been operated in Madrid before the closure of the clinic where operations were done. (People who understand spanish language can read the whole history at the following address (balearic forum)):

http://abdem.mforos.com/474058/2065490- ... leno-ctos/

Today, CTOS operation are back. There are done in Chile, Spain and Japan. Chileans say that every MS person had a CTOS problem. But, since the Zamboni theory, there are two solutions : the CTOS surgery and the Liberation Procedure. Chileans fight to have access to both operations. For now, they have access only to CTOS surgery, since last March. They have the same fight for the Liberation Procedure than other people around the world, but they have an alternative.

You can find them on Facebook. Their group is called Contra la Esclerosis Multiple en Chile.

[sonia52]

I found that in 2002, but the CTOS operation was made known in 1982 or 1983 by a physician born in Cuba and living in Puerto Rico, whose name is Fernandez Noda. (http://free-news.org/jacamp03.htm)

Doctor Noda had published papers in medical journals in the 80's and after. Thirty years later, his knowledge is finally applied in at least three countries.

[sonia52]

Sorry for my English. It is difficult for me to write in English.

[sonia52]

I forgot something : I try to find somebody who has been operated between 1983 and 2004, to ask them how they feel today. If I learn something, I will tell you what I found.

[Johnson]

Sorry for my English. It is difficult for me to write in English.

Votre Anglais c'est plus parfait de ma Francais!

[sonia52]

Thanks Johnson.

I can tell you that it's easy to understand what you write in French too. It's wonderful. People here can express themselves as well as they can, and others make efforts to understand what they say. It's a good example of understanding between people speaking different languages.