Sept 8, 2009 Bologna CCSVI conference- finalized notes

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

Postby cheerleader » Sat Sep 12, 2009 9:53 am

marcstck wrote:Cheer, thanks for the wonderful job of globetrotting medical journalism that you did. Bravo!
I hope you don't mind, but I forwarded your notes to the neuro down at the NIH that is handling my case. She thanked me for the info, and promised to give it a very thorough read.

Good luck at the Emmys. Has Jeff won any hardware before? The best I could do before MS put the kabosh on my career was win a "Platinum DVD" award for a Pearl Jam DVD that I worked on. It's hanging on the wall near my computer, kind of a bittersweet memento...


Thanks, Marc...Jeff's got 4 golden ladies, today would be 5 if he wins. It sucks that illness took away your career. I'm so sorry for that. I hate the MS strikes talented, bright young adults in their prime. You had so much more to offer in your profession. It's one of the reasons I've become radicalized (actually, someone who works with pharma told me he thought Zamboni and his team were "zealots" at the conference, before he knew who I was, and I thought...hmmm, zeal is a good thing, I'll take that as a complement.)
Hope the neuro at NIH is interested...sorry if my notes are disjointed, but my hand was flying! I came home even more convinced that venous reflux and stenosis is causative...and hope we'll get more docs interested.
cheer
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Postby Loobie » Sat Sep 12, 2009 10:44 am

marcstck wrote:It's hanging on the wall near my computer, kind of a bittersweet memento...


I took down a few months ago the numerous racquetball tournament placques and awards that I had won over the years. It was bittersweet as hell also. I still had all kinds of stuff like my first racquest sponsorship memo and all kinds of stuff like that adorning my office. I haven't decided if they'll go back up again or not. When I took them down, I was in a bad spot not wanting any reminders of my past health. But now I've been thinking that I should embrace them as nothing more than accomplishments from my life; I earned that stuff. Most of my life was without MS, and I don't think just because I have it now that it diminishes anything I did previously, but sometimes, you're right Marc, the memories are very bittersweet.
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Postby zap » Sat Sep 12, 2009 11:04 am

I hear that pain - although my accomplishments and future hopes were more intellectual than physical, the MS has sapped away their promise just the same ... I simply cannot think like I used to. My thinker would proabbly be using a walker now, compared to where it was/should be.

Sometimes I get bitter or sad but then remember - none of this was mine to begin with, all of this body and its abilities were on loan and I always knew it would all be called back in, one way or another.
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Postby mrhodes40 » Sat Sep 12, 2009 11:19 am

All I'm wondering is whether regions where neurological symptoms originate simply suck up iron, or whether the iron exacerbates those neurological symptoms.
Ahh, I see :idea:

I know for sure in the CVI world, chronic venous insuff., it is a chicken or egg question, does the iron cause the inflammation or is it in response to the inflammation?

Here would be the model for it causing it: the venous insufficiency changes the endothelium and the blood and thence iron is allowed into the tissue. The iron is irritating to the tissue and engenders an inflammatory response.

The model for after the fact: The venous insufficiency damages the local tissue and then inflammatory cells respond to heal the area, bringing iron with them.

There are arguments offered on both sides, but there is a leaning towards the first idea, that iron sneaks through the opened endothelium and then it causes an inflammatory response.

I can offer you this real life evidence to help think about this, when you get a bruise only part of the pain you feel is from the damage to the tissue, part of the pain and inflammation is from the blood which leaked into the skin, your body actively responds to this in order to clean it up and move it out of there.

You can even get a bruise where the original injury is insignificant, but it was enough because of the angle of it or something that it caused a blood vessel to break and then blood to leak. As you touch it a day or two later it is tender. Sometimes you have no idea how it even got there, but the inflammation from the blood leak is sure noticeable!

SO I think you honed in on the debate--does the iron go there first or not--and I am not sure that the answer is known on that. It looks to me like the work Dr Haake is doing with SWI is going to be answering that in time.
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 sou » Sun Sep 13, 2009 6:59 am

Hi.

I used to be a brilliant (according to my employers) and very promising computer programmer working in the IT industry since I was 19 years old. I know that the most intellectually productive period of our lives is until the age of 35. Not any prozes, but at least I had 7 productive years.

Today, at age 28, my spirit is not how it used to be, nor it will ever be like that. Is it depression? Is it MS? I will never know. But what pisses me off is the fact that my neuros try to convince me that they are on my side and keep pushing me to start an MSDPI (MS Drug of Proven Ineffectiveness), ignoring the fact that I reached this point while on MSDPIs and feel much better since stopping them and starting diet, exercising and supplementation.

I wonder how worse, in terms of social life only, can I be. I am literally home bound. How more home bound can I be than I already am?

How can I trust a person that takes 200 Euro per Tysabri infusion? How can I trust a person that 2 years ago threatened me that if I didn't start Tysabri, I would be much worse by now? (which, luckily, did not happen) How can I trust a person who every time I ask a scientific question replies to me that I am no doctor and should leave these things to them.

I believe I have crossed the point of no return, thus:
"I hope nothing, I believe nothing. I am free." --Nicholas Kazantzakis

Thanks for listening to this requiem of my life. What I live now I consider an after-death experience.

Off topic, but many of you have posted your accomplishments in life, so I did mine.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Ana » Sun Sep 13, 2009 7:08 am

How can I trust a person that takes 200 Euro per Tysabri infusion? How can I trust a person that 2 years ago threatened me that if I didn't start Tysabri, I would be much worse by now? (which, luckily, did not happen) How can I trust a person who every time I ask a scientific question replies to me that I am no doctor and should leave these things to them.


That's exactly my situation! I know how you feel. Even so I don't have any mental problems at the moment but my legs are spastic and weak which is also a torture for me. I don't think that your post is off-topc, it has touched me deeply.

So I will get rid of my doctor as he is no good for my mental health. As soon as I decided to get of him I already started feeling better. And I even started feeling more better since I found this forum!
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Postby cheerleader » Sun Sep 13, 2009 9:17 am

sou wrote:How can I trust a person who every time I ask a scientific question replies to me that I am no doctor and should leave these things to them.


Dear sou,
thank you for sharing how MS has affected your life, your career, your future...it sounds like you are not alone. Your statement above touched me. I have been talking to Jeff about the internet revolution as analogous with Martin Luther hammering his thesis on the chapel door. The high priests of medicine can no longer claim "they know everything" -because they obviously do not. There is research available to us to read for ourselves, in our own mother tongue. And we do not need them to interpret the "truth" anymore. Just as Luther brought God's word to the lowliest, the internet can bring medicine and science to anyone who has an intellectual curiosity. And I know you have that in spades!!!

To you and Ana...take care of your health, find doctors that allow you to participate in your healing, and do not give up hope...I truly believe we are closer than ever.
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http://ccsviinms.blogspot.com
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Postby Ana » Sun Sep 13, 2009 9:26 am

Thanx Cheer for your kind encouraging words and the fantastic work you are doing for all of us! :)
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Postby radeck » Sun Sep 13, 2009 10:22 am

redundant post - deleted
Last edited by radeck on Sat Dec 19, 2009 9:51 pm, edited 1 time in total.
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Postby mrhodes40 » Sun Sep 13, 2009 10:54 am

I have been talking to Jeff about the internet revolution as analogous with Martin Luther hammering his thesis on the chapel door. The high priests of medicine can no longer claim "they know everything" -because they obviously do not.


YES. and when they contradict themselves and come up with brand new directions of thought, we are supposed to not notice that they are now affirming that they were wrong before..........and assume that THIS time, they really DO have it....

ECTRIMS paper, see Dignans thread in general for ref:

These include reports that show that commencing myelin breakdown is preceded by a pre-phagocytic phase characterised by an acute loss of oligodendrocyte perikarya from otherwise intact myelinated tissue and that this occurs largely in the absence of T cells.


this says in plain language that before the immune system gets there with phagocytes, which are cells that destroy foreign or dead tissue, the oligodendrocyte's perikarya which is the branched looking part at the end of the cell, is already lost even though the myelin is still fine....and this happens with no t-cells in place.

How many times have we been told that MS is an autoimmune attack on myelin???

Now they are saying in that same paper in an evolution of autoimmunity that in fact the above sequence of events might possibly happen because of a serum antibody against astrocytes, which some have reported they think may be the issue . They are tooting the horns about how incredible this breakthrough will be.........

IF it comes out..........

like they THINK it might.....

when they can prove that the interesting suggestion that this is what might be going on IS what is going on.............

oh my. *sigh*
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 cheerleader » Sun Sep 13, 2009 11:05 am

TERRIFIC point, Marie. I couldn't believe the back-peddling at ECTRIMS. And not to carry the analogy too far, but the high priests had a terrific system of getting $ by selling indulgences to the masses. The poor and uneducated believed they had to pay for their salvation. The priests had a good deal going until Luther.

The neurological community knows the myelin under attack theory is done, as evidenced by ECTRIMS...and will be looking for new avenues for research $. As one very calloused MS doc told me at the conference (before he knew who I was) ...."if this (CCSVI) is true, I'm out of a job" and "Frankly, MS patients are just numbers to me." When I revealed my association with CCSVI, as the wife of a "number"...he just about threw up. And I will not reveal his identity, but I repeat his words as a warning to all who have doctors that ask them not to question them. Be forewarned. There are alot of terrific neuros out there (met several at the conference) just as there were and are honest priests. They should be willing to talk to you. They may disagree, but they should be open to dialogue.
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http://ccsviinms.blogspot.com
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Postby Lyon » Sun Sep 13, 2009 12:23 pm

.
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Postby whyRwehere » Sun Sep 13, 2009 12:27 pm

Unbelievable...it makes me ill. :evil: (in response to cheer's post)
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Postby sou » Sun Sep 13, 2009 1:00 pm

Hi.

I have many co-students who are practicing doctors. I have talked with a wannabe neurologist who has MS herself. I thought she would be interested in the CCSVI theory. Well, I was wrong! Again, her main argument was that I am not a doctor and I should not have an opinion about my disease. Moreover, I should not study research papers. She just ignored the fact that I also study bioinformatics at the medical school and I have been taught how to study such papers. But the most frustrating of all was that the only comment about the paper was that the author (P. Zamboni) had a funny name!!!

In conclusion, she said: "MS can't be something else! I know many brilliant neurology professors that support the current theory. They can't be wrong!"

Well, I replied: "Oh yes. But I am a little confused. How can there be more than one Popes who are never wrong about anything? How many patients have these Popes cured?"

That was the last civilazed, rational argument of this conversation. She is so stubborn that she will make a good neurologist! I wouldn't want to be a patient of her, though. I wouldn't even allow her to cut my fingernails.
The other doctor I talked with, not about CCSVI, was a practicing orthopaedist (the doctors that fix broken bones). And he spoke about his patients as if they were machines. "If I don't experiment, how am I going to develop my skills? I don't really care about what drugs I will prescribe. I will give the one that brings me more money."

Well, these are our doctors. Are you sure you trust the opinion of these greedy egomaniacs?

[Edit]: I don't blame ALL doctors! Just the greedy and the egomnaniacs. ;-)

sou
Last edited by sou on Sun Sep 13, 2009 2:51 pm, edited 1 time in total.
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Postby cheerleader » Sun Sep 13, 2009 1:22 pm

Again, I'll state that there are many, many wonderful neurologists. I do not want to bash the practice here...that does us no good.

And they don't have to agree with CCSVI to be wonderful, that is not the criteria....I know Marc has a terrific team working with him- and they are rather dubious, but they listen to him. Meeting Dr. Eliot Frohman and Dr. Patricia Coyle was inspiring for me.
All we want is a chance to dialogue before the door is shut.
Dr. Dake is having a joint meeting with the neurology and vascular depts at Stanford this coming week. I wish them well.
I'm going to start a new thread on Dr. Frohman's ideas about CCSVI, because he had many thoughtful insights. Figuring this out is going to take a multi-disciplinary approach.
cheer
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