Some news

[L]

To be fair, 60% MS, 40% cocktails..

Well, I like a good story better but I suppose I could muster an appreciation for the truth.....

It was a date. I was so very glad that I wasn't seen walking home like spiderman, using the walls as a walking frame and then the fall. In the end some helpful, friendly people had to carry me to my temporary home to get my first aid. I can laugh about it now. I remember laughing about it then too.. I lost half a tooth, would you believe it. I had it repaired and now I can't even tell which one it is. I remember having a broken tooth until I got back home was a bit annoying (and painful). I had to keep drinking cocktails in order to forget about it.

This should be against the rules, cluttering someone else's thread with nonsense. It probably is. Sorry, I'll shut up now.

[Lyon]

.

[costumenastional]

I dont mind. Whoever wants to focus on the subject will do just this.

Misdiagnosis... well, Lyme will hit one very hard and its only difficult to think of it as MS only at the first stages. As for Lupus, it is very rare to manifest first within the CNS and there is no such case who would be able to function after a few years. Same goes for sarco.

Active Lyme would lead not only to neurological symptoms after some years. It is detectable. Even if one comes out positive at some point it doesnt mean that the disease is active at the moment. Dont forget we are talking virus here. The test can only tell that your body fought with it sometime.

This leaves us with MS and some diseases that are named MS. Vascular MS and autoimmune MS... or something...
There are clearly MS cases which Zamboni's theory can't touch.

But i have a feeling (and i know some of us dont like "feelings") that those of us with malformed veins will be proved to have the worst prognosis.

I am not cured after "liberation". But there are some improvements. In a years time we will all know better. Until then, everyone should get tested for CCSVI. It is no coincidence that some very intelligent and educated patients and caregivers have already done so. It s an opportunity for the rest of us to feed from their knowledge and their efforts to share it. Respect.

[marcstck]

I dont mind. Whoever wants to focus on the subject will do just this.

Misdiagnosis... well, Lyme will hit one very hard and its only difficult to think of it as MS only at the first stages. As for Lupus, it is very rare to manifest first within the CNS and there is no such case who would be able to function after a few years. Same goes for sarco.

Active Lyme would lead not only to neurological symptoms after some years. It is detectable. Even if one comes out positive at some point it doesnt mean that the disease is active at the moment. Dont forget we are talking virus here. The test can only tell that your body fought with it sometime.

This leaves us with MS and some diseases that are named MS. Vascular MS and autoimmune MS... or something...
There are clearly MS cases which Zamboni's theory can't touch.

But i have a feeling (and i know some of us dont like "feelings") that those of us with malformed veins will be proved to have the worst prognosis.

I am not cured after "liberation". But there are some improvements. In a years time we will all know better. Until then, everyone should get tested for CCSVI. It is no coincidence that some very intelligent and educated patients and caregivers have already done so. It s an opportunity for the rest of us to feed from their knowledge and their efforts to share it. Respect.

costume, there is much evidence regarding chronic Lyme been misdiagnosed as MS. In chronic Lyme, the bacteria is very difficult to detect, and very difficult to eradicate. The most common blood test used to detect Lyme quite often miss it completely. Here's a page with links to a plethora of studies regarding chronic Lyme disease being misdiagnosed as MS:

http://www.lymeinfo.net/multiplesclerosis.html

Your assertions regarding lupus and sarcoidosis are also misguided. Although rare, lupus can primarily attack the CNS, as can certain forms of sarcoidosis. After being diagnosed for over six years, I was retested extensively for both (negative results).

As for being left "with MS and some diseases that are named MS", as I stated before, there are literally dozens of diseases that can be misdiagnosed as MS that have nothing to do with MS. Here's a thorough paper that goes into the differential diagnosis of MS, which includes a list of 100 such diseases.

http://www.neurology.wisc.edu/publicati ... euro_2.pdf

Facts are facts, and the fact that MS is commonly misdiagnosed does not cast doubt on the CCSVI hypothesis. It's possible that your fellow patient who had wide-open veins is misdiagnosed; it's also quite possible that he simply is suffering from a non-vascular form of MS.

Trying to force CCSVI to explain all aspects of multiple sclerosis does not do the hypothesis justice. MS presents a very complicated picture, if CCSVI can explain a major part of it, we should be thrilled beyond belief.

[costumenastional]

I ve read that 100 diseases paper Marc. I know there are hundreds of disease that can mimic MS. The problem is that i dont trust them any more. If it took them two hundred years to find that 2 major veins may play a role, how on earth should i believe even that all these diseases actually exist???
I am not trying to link every neurological problem with vascular issues of course. I am just saying that i dont trust what they have already said and written and published altogether. I mean, were are the cures if they are so damn smart you know?
Not to mention that 99% of their "tests" are never definitive. I paid 400 euros for the NMO IgG only to be told that i have to do it again. Fuck that shit..
I do know though that CNS Lupus will manifest very rare and with catastrophic consequenses. I have never read of a patient with that kind of disease to function for a number of years after first symptoms occured.
This is most probably the reason you came out negative. If you were positive you would probably not be here with us (God forbid)
I have ANA 1:320 myself. All other tests supportive of Lupus are negative. And this is what i expected in the first place.
Have in mind that Lyme can be excluded not only by blood tests but via clinical exam also. The reason this can happen is because Lyme can mimic ms only in the first couple of years after that bug bites. From there on, without medication and if the disease takes over i dont see how a doctor can misdiagnose it with MS. Also if one is positive that doesnt mean that his problems are due to Lyme. Many of us can have MS and inactive Lyme disease.
At least that is what a lady neuro told me last week. She prescribed a Lyme test for me because it s the only thing i havent done along with some other virus tests. But she said that it is highly unlikely for me to be edss 1-2 with Lyme while my first symptom goes back to 2004. And if i come up positive Lyme would be probably something my organism have fought and won a long time ago.
So, i am left with one big question: is there a possibility for MS to be only one disease which can only put you on a chair only if you have CCSVI?
That dude i told you about has oligoclonal bands and at least 10 brain lesions. He was dxed 8 years ago cause his eye was ticking. He has been asymptomatic ever since with stable MRIs. Why? Hopefully because his veins are perfect.

Or he has one of those 100 diseases. But where does this leaves us?

An "educated" guess would be that myelin destruction does not happen due to ccsvi. There is one factor (THE factor) that leads immune cells to act up like that. CCSVI only contributes to make things worse. That factor may exist in a significant portion of earths population. But it manifests only in some of us.
CCSVI could explain some symptoms we share though. Symptoms like fatigue, that global brain fog feeling etc. Things that immune reaction and demyelination could never explain.

[malden]

...I have seen his MRIs so i know he has multiple brain lesions.

The thing is that his jugs are PERFECT. And i mean perfect. I thought the doctor was screening a horse or something. Doc said that there is no way in hell this man has a vein problem and we are talking about a radiologist who has already dxed 30 of us and sent them for angio.

So, how come this dude's brain is full of MS lesions if no reflux and microhemorages are taking place. I mean, why there is a BBB breach there you know? He has oligoclonal bands and all.

All in all, this made me very skeptical.
...

This is not unusual. Here is abstract of a research article
http://www3.interscience.wiley.com/jour ... /abstract?
about an complex and objective study from a team of renowned experts from the top clinics.

56 MS patients and 20 controls were studied. In Results they published:

...Except for one patient, blood flow direction in the IJVs and VVs was normal in all subjects. In none of the subjects was IJV stenosis detected...

So this 55 MS patients doesn't have vain problems to.
So... wherefrom the MS come?

Best regards, M.

[sbr487]

...I have seen his MRIs so i know he has multiple brain lesions.

The thing is that his jugs are PERFECT. And i mean perfect. I thought the doctor was screening a horse or something. Doc said that there is no way in hell this man has a vein problem and we are talking about a radiologist who has already dxed 30 of us and sent them for angio.

So, how come this dude's brain is full of MS lesions if no reflux and microhemorages are taking place. I mean, why there is a BBB breach there you know? He has oligoclonal bands and all.

All in all, this made me very skeptical.
...

This is not unusual. Here is abstract of a research article
http://www3.interscience.wiley.com/jour ... /abstract?
about an complex and objective study from a team of renowned experts from the top clinics.

56 MS patients and 20 controls were studied. In Results they published:

...Except for one patient, blood flow direction in the IJVs and VVs was normal in all subjects. In none of the subjects was IJV stenosis detected...

So this 55 MS patients doesn't have vain problems to.
So... wherefrom the MS come?

Best regards, M.

Thats because they did not use the right protocol (they never intended to, it seems). This has been discussed elsewhere in detail ...

[costumenastional]

This is not unusual. Here is abstract of a research article
http://www3.interscience.wiley.com/jour ... /abstract?
about an complex and objective study from a team of renowned experts from the top clinics.

56 MS patients and 20 controls were studied. In Results they published:

...Except for one patient, blood flow direction in the IJVs and VVs was normal in all subjects. In none of the subjects was IJV stenosis detected...

So this 55 MS patients doesn't have vain problems to.
So... wherefrom the MS come?

Best regards, M.

Yes, i ve read that too. I dont really know if they screened for ccsvi as they were supposed to to be honest. But hey, they could be right for some patients. This doesn't mean that Zamboni s full of it. But it looks like CCSVI is responsible only for the mess SOME of us are in.
All in all, i really doubt that one can only have CCSVI. Something else takes place also. Think of the 22% of healthy controls with only CCSVI. They may get sick, but if something else apart from CCSVI doesnt happen they may live a normal life. I would open my veins if i was in their shoes though...

[malden]

Thats because they did not use the right protocol (they never intended to, it seems)...

We don't discuss 'protocols' in this thread. The point costumenastional set in opening post is that this MS suffering man's neck veins are 'PERFECT', and this study find the same in other 55 MS suffering patients.

I think that 5 MD's and 1 PhD from:

Department of Neurology, University Hospital Charité, Humboldt University, Berlin, Germany;
NeuroCure Clinical Research Centre, University Hospital Charité, Humboldt University, Berlin, Germany
Department of Neurology, Segeberger Kliniken, Bad Segeberg, Germany
Blizard Institute of Cell and Molecular Science, Centre for Neuroscience & Trauma (Neuroimmunology Group), Barts and The London Queen Mary School of Medicine & Dentistry, London, UK
UCL Institute of Neurology, Department of Neuroinflammation, London, UK

are competent and capable to find vein malformations and blood flow anomalyes if they exists.

M.

[sbr487]

We don't discuss 'protocols' in this thread. The point costumenastional set in opening post is that this MS suffering men neck veins are 'PERFECT', and this study find the same in other 55 MS suffering patients.

This is not about protocol. This is efficacy of a paper that uses protocol that deviates from what has been defined by Dr. Zamboni.

I think that 5 MD's and 1 PhD

Most of the papers at this level are published by Docs and post docs. That's generally the base line. That does not automatically make it authentic.

are competent and capable[/b] to find vein malformations and blood flow anomalyes if they exists.

Good. You can keep that opinion to yourself

[costumenastional]

Please guys, chill out. It is a fact that not all of us suffer from CCSVI. As it is a fact that most of us do. But failure to detect CCSVI in at least 2 of 55 is weird. That s all there is to it.
The link Zamboni has made is real. And like SB said, there is another thread about this study so...

[Justliberated]

I agree with Sofia, the differences in the MS community are disturbing. Why can we all not act in the common good. What is the point of denying CCSVI!

To me it is very plausable that restriction in blood flow results in the death of T cells. No Tcells, no myelin. I would love to see reaserch on this.

I beleive immune response is a by product, not the cause of damage to nerve tissue and de-mylination.

[sbr487]

Please guys, chill out.

Hand me a beer, please

[costumenastional]

I agree with Sofia, the differences in the MS community are disturbing. Why can we all not act in the common good. What is the point of denying CCSVI!

To me it is very plausable that restriction in blood flow results in the death of T cells. No Tcells, no myelin. I would love to see reaserch on this.

I beleive immune response is a by product, not the cause of damage to nerve tissue and de-mylination.

I think you are missing a point or two here friend. T cells are actually responsible (mostly, along with B and who knows how many more types of immune cells) for myelin destruction. The reason they attack on the myelin may be waste disposal inside the CNS due to reflux and BBB breach CCSVI can lead to.
Axon and NOT Tcell death may take place due to lack of oxygen when CCSVI exists.
Just for the record, i am certainly in favor of CCSVI and pushing for more and more and more research towards this direction.
And immune response IS secondary to something. The question is: if not to CCSVI then what?

SB a cold one for you ;)

[L]

Just to point out that lyme disease is relatively uncommon in Europe, so if, in North America, it's a common misdiagnosis then this will also lower the misdiagnosis statistic..

-edit- after I posted I looked this up and couldn't find anything! Is it correct to say that Lyme disease is more common in North America? I'm sure I heard this on a radio program about neurological disorders.. It's transmitted with tick bites, right?

-another edit- I'm wrong http://www.lymebook.com/africa-europe-c ... ed-kingdom

In Italy, 24 cases of Lyme Disease were documented over the last year. Keep in mind, the actual number of cases is probably much higher due to inadequate testing and diagnosis.

!