Some news

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

Some news

Postby costumenastional » Tue Jul 06, 2010 1:39 am

Yesterday, i visited the same radiologist who dxed me with CCSVI a couple of months ago. He scanned me to see how s everything after the angio i had in Sofia. My jugs are far from perfect but this time they are actually visible with me right one being a bit wider. He told me to go back in 3 months time.

And now the important part. I traveled there (he is in another city) with a fellow ms patient. He is kind of asymptomatic except that his brain may stop working from time to time. But then again, maybe it s the drugs he is taking.
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.

I know some of us would think that there is a vein problem that was missed somehow cause only a venogram can reveal the true picture but i am telling you: those veins where FLOWING.
The only chance is for him to have a totally blocked azy but he is edss 0 6 years after dx or so.

Another disease? Whatever...just saying what i saw.

The fact is that MY veins are a mess (with collateral circulation) even after the operation comparing to his. So, i guess opening them was a good thing.
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Postby se1956 » Tue Jul 06, 2010 2:03 am

I think we are talking about a risc factor:

He/she never smokes but got lung cancer (about 20% of cases). Why??

But for about 80% of lung cancers smoking is the main cause.

R.
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Postby sofia » Tue Jul 06, 2010 2:21 am

Dr. Grodzinsky told me when I went back to Sofia after I started feeling worse again aftter my procedure. "MS is a multi factoral disease."

My veines were wide open, and he was thinking some other factor was causing me to feel worse, and offered me to see the neurologist.

I've heard many things can cause leaky BBB, toxins, bacteria and viruses. Suppose reflux is just one.

I am actually very upset about the whole "liberation war" going on. It should not be one camp against the other, where one is to disprove the other. It should be groups joining up, pulling togehe to offer the patient the best possible solution for the individual patient.

Btw how are you feeling now, with everything? I'll send you a pm as well :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Algis » Tue Jul 06, 2010 2:21 am

I believe that with or without stenoses (but easier and faster with) the endothelial (BBB?) aspect has to play a role... Some persons might have it "easier" to cross than others (?)

Very subjective explanation tho :P
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Postby costumenastional » Tue Jul 06, 2010 2:23 am

se1956

It s not that simple when it comes down to CCSVI my friend.

There is a logic that follows Zamboni's hypothesis. This is what is making it so plausible after all.
In general it says that immune response is secondary, following iron and other wastes deposition in the brain caused by blood reflux. The later is supposed to lead to the blood brain barrier breach we all have heard so much about. All these result in a attempt from mainly T cells to clean up the mess, leading to demyelination.
All in all, this is how MS lesion are created. I suspect you already know about all this, just wanted to make sure.
And having perfect flow does not justify that patient's brain condition according to CCSVI.
All i can think of is another demyelinating disease who presents itself with oligoclonal banding and other suspicious findings in the spinal tap serum.

Make no mistake: CCSVI is a real condition which must be addressed.
Seeing the dude's veins made my jealous. Mine were nothing close to his. I think that MS patients with damaged veins will have a much more terrible course compared to others. But it doesnt explain it all so far.
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Postby costumenastional » Tue Jul 06, 2010 2:29 am

sofia wrote:I've heard many things can cause leaky BBB, toxins, bacteria and viruses.

Btw how are you feeling now, with everything? I'll send you a pm as well :-)


Toxins, bacteria, viruses, CCSVI... And no way to find the one who is causing it in each and every one of us...
Instead, they are fighting like idiots over money.

I am ok i guess.. I d like to be better though. Much better..
I am certainly not worse when i was getting worse by the week pre op.
Placebo? Anticoagulants? True beneficial effect? Only time will tell. Improvements are present but tiny so far.
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Re: Some news

Postby sbr487 » Tue Jul 06, 2010 3:15 am

costumenastional wrote:Another disease? Whatever...just saying what i saw.


All one can say is that this case provides opportunity to understand CCSVI better. Exception should be treated as an exception but it can provide better visibility ... Maybe Dr. Schelling or Dr. Z or Dr. S can provide more insight ...
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Re: Some news

Postby costumenastional » Tue Jul 06, 2010 4:20 am

sbr487 wrote:Maybe Dr. Schelling or Dr. Z or Dr. S can provide more insight ...


I really doubt.

CCSVI has a few VERY strong points. One of them is the reason immune cells may be able to penetrate vessel walls and make their way into the CNS in large numbers. Chronic reflux. What about their myelin destructive predisposition?

CCSVI may well explain the reason many of us got sick in the first place. But while some get MS other ccsvi patients dont. There is also SOMETHING ELSE contributing to the exacerbation of the disease.
The link between the two conditions is apparent but...something is still missing.

Anyway, while we wait for further research we should all get our veins fixed. And those of us with no ccsvi should get tested for every other demyelinating disease out there.
My opinion.
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Re: Some news

Postby BELOU » Tue Jul 06, 2010 5:11 am

costumenastional wrote:he is edss 0 6 years after dx or so.

Another disease? Whatever...just saying what i saw.

The fact is that MY veins are a mess (with collateral circulation) even after the operation comparing to his. So, i guess opening them was a good thing.


Same as me, EDSS:0 after 6 years, but I have a reflux in my left jugular and 3 tiny lesions...

This shit is complicated...
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Postby Algis » Tue Jul 06, 2010 5:17 am

Stenoses and reflux: does it "implies" BBB breach? Maybe some have stenoses and reflux and in no meaningful way do they have harmful cross of the barrier?

(sorry am not sure I express myself clearly here :P )
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Postby malden » Tue Jul 06, 2010 5:20 am

costumenastional wrote:...In general it says that immune response is secondary, following iron and other wastes deposition in the brain caused by blood reflux. The later is supposed to lead to the blood brain barrier breach we all have heard so much about. All these result in a attempt from mainly T cells to clean up the mess, leading to demyelination.
...


Demyelization can occured to peripheral nerve, not just to brain neurons. How can be this damage (in leg or arm) in connection with narrowing in neck veins?

M.
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Postby Algis » Tue Jul 06, 2010 5:28 am

not just


You answered your own question
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Postby costumenastional » Tue Jul 06, 2010 5:33 am

Malden wrote:Demyelization can occured to peripheral nerve, not just to brain neurons. How can be this damage (in leg or arm) in connection with narrowing in neck veins?


I guess it cant be connected Malden.
But peripheral neuropathies are categorized as different diseases, other than ms. Zamboni's hypothesis has to do only with damage INSIDE the CNS and i personally think that he has done a decent job describing the way CCSVI could contribute to that. Except if i didnt get your question right.

If i did, there are many conditions were nerves are affected but they have nothing to do with MS or CCSVI altogether.
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Postby malden » Tue Jul 06, 2010 6:18 am

costumenastional wrote:I guess it cant be connected Malden.
But peripheral neuropathies are categorized as different diseases, other than ms. Zamboni's hypothesis has to do only with damage INSIDE the CNS and i personally think that he has done a decent job describing the way CCSVI could contribute to that. Except if i didnt get your question right.

If i did, there are many conditions were nerves are affected but they have nothing to do with MS or CCSVI altogether.


To make my point clear, supose this scenario:

My CNS neurons in a part of a brain which is in charge for moving my leg are OK. I decide to move my leg, and CNS start to proceed command to my leg muscle, and it do it without problems. But neurons that connect my leg muscle to CNS have bad myelin sheath insulating the nerves, and command "Contract muscle" weakening and degenerate to "C....r...mus...." and my leg muscle is confused, don't know what to do, one muscle thread contract, other extend, and result is cramp or not action at all...

Best regards,

foggy M.
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Postby costumenastional » Tue Jul 06, 2010 6:40 am

Well, this sounds like what many of us are experiencing friend. What i dont get is what makes you think you know which neuron or which part of your nervous system in general is responsible for every symptom.
All i want to say is that maybe you have CCSVI and MS, MS only, Lyme, sarcoidosis, Lupus and the list goes on...and on...and on....
We are talking about CENTRAL nervous system when we are talking MS and CCSVI.

Just have in mind that electric signal going down to your feet, can also travel back up via the same route. Not to mention that damaged nerves inside the CNS are perfectly capable of resulting in cramps.

I dont think that the nerves that connect your muscle with your CNS (if there is such a description) can cause what you are describing. What makes you think something like that is happening to you? Do you suffer from a peripheral neuropathy??

If you have an MS dx, you should focus in your brain and spine ;)
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