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

Postby msjen » Tue Jan 25, 2011 12:53 pm

I want my IR to treat my veins and my Neurologist to treat my nerves. That being said, my Neurologist hasn't done much besides offer me drugs; but he doesn't know how they work. I don't doubt that they work for some people, but I'm not going to put something in my body when they can't tell me why. That's just me. My IR hasn't offered me anything outside what he can do. I'm also glad that the MS Society has a youth camp so that my daughter understands that these issues are not in my control. I don't really care what someone with letters after their name tells me until I do my own research. My neurologist told me that the blood I felt pumping in my head had to do with MS and that there was nothing that could be done about it - I've found out through research and having the procedure done in July that this neurologist was full of it since the blood pumping in my head went away. I'm not an expert as I don't have much time to research (I do what I can) but I do know how to listen to my own body. Maybe I can find someone out there who understands the disease but doesn't want to push drugs down my throat. Until then I would rather listen to those for CCSVI.
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praise

Postby leetz » Tue Jan 25, 2011 1:01 pm

praise be to the Lord and my IR....CCSVI is real and I would say it is Interventional Radiologist that are really helping people NOT Neuro's and chemo and crab drug's...I still need my Neuro but I REALLY REALLY need my IR Dr. Siskin!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby David1949 » Tue Jan 25, 2011 1:45 pm

Who cares what neurologists think? Do they know how to cure MS? No they don't have a clue.

What matters is if we, the patients, think the evidence is convincing enough to have the procedure done.
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David...

Postby leetz » Tue Jan 25, 2011 2:09 pm

So true! Some Neuro's think MS is their disease...If they had it then they too would be going to an IR to reap the benefit's involved here..lol..I think some of them actually think THEY DO HAVE MS! Amazing, the love of money is the root to all evil!

God Bless!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Should interventionalists treat MS?

Postby frodo » Tue Jan 25, 2011 2:13 pm

Lyon wrote:
frodo wrote: The question is, should neurologists treat vascular problems?
To my awareness Neurologists have no interest in treating vascular problems but obviously the opposite can't be said.

But this is just another way of rehashing the questions which remain to be answered, "does a vascular problem really exist and if so is MS a result?".

While it remains to be proven that (CCS) venous insufficiency exists and is capable of causing MS symptoms, something that isn't in doubt is that people with MS suffer neurological damage, which is logically the domain of neurologists.


By now the official situation is this (correct me if I am wrong)

-it is accepted that CCSVI exists
-it is accepted that appears associated with MS
-it is unknown if it is cause, consecuence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

The conclusions of ECTRIMS that MS societies have quoted several times was "with the information we have, it cannot be supported that CCSVI is the cause of MS". This conclusion explicity admits the existence of CCSVI. About the association with MS there are also several anti-angioplasty publications that admit that exist.

Finally, when you say "Neurologists have no interest in treating vascular problems" you are wrong or right depending what you mean. In Canada they are preventing their patients to get diagnosised for vascular diseases. For sure, neurologist show at least a great interest in controlling how vascular diseases are treated (or not treated).
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Postby Lyon » Tue Jan 25, 2011 2:51 pm

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Last edited by Lyon on Sun Nov 20, 2011 4:32 pm, edited 3 times in total.
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Re: Should interventionalists treat MS?

Postby CCSVIhusband » Tue Jan 25, 2011 2:52 pm

frodo wrote:
Lyon wrote:
frodo wrote: The question is, should neurologists treat vascular problems?
To my awareness Neurologists have no interest in treating vascular problems but obviously the opposite can't be said.

But this is just another way of rehashing the questions which remain to be answered, "does a vascular problem really exist and if so is MS a result?".

While it remains to be proven that (CCS) venous insufficiency exists and is capable of causing MS symptoms, something that isn't in doubt is that people with MS suffer neurological damage, which is logically the domain of neurologists.


By now the official situation is this (correct me if I am wrong)

-it is accepted that CCSVI exists
-it is accepted that appears associated with MS
-it is unknown if it is cause, consecuence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

The conclusions of ECTRIMS that MS societies have quoted several times was "with the information we have, it cannot be supported that CCSVI is the cause of MS". This conclusion explicity admits the existence of CCSVI. About the association with MS there are also several anti-angioplasty publications that admit that exist.

Finally, when you say "Neurologists have no interest in treating vascular problems" you are wrong or right depending what you mean. In Canada they are preventing their patients to get diagnosised for vascular diseases. For sure, neurologist show at least a great interest in controlling how vascular diseases are treated (or not treated).


Great post frodo ... spot on ... now for the circular logic to spin the way out of it - and THEN try to deny that CCSVI exists (admitted to and published in a peer review journal by a study that the 'skeptics' love to quote until the part where they have to admit it accepts that CCSVI is a real thing) or that it is associated with MS (admitted to through the same study - remember? early stage MS or late stage MS - even though many many reports from patients show CCSVI in both cases ... even in cases of people who don't have an MS diagnosis).

looks like the circle started before I could make my post.
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Re: Should interventionalists treat MS?

Postby CCSVIhusband » Tue Jan 25, 2011 3:04 pm

Lyon wrote:
frodo wrote:
By now the official situation is this (correct me if I am wrong)

-it is accepted that CCSVI exists
-it is accepted that appears associated with MS

-it is unknown if it is cause, consecuence or comorbidity respect MS
-it is unknown the effect of angioplasty in the MS evolution

This situation remains exactly the same as it's been since day one in that proponents of CCSVI are in agreement with the above and the rest await some kind of proof.

frodo wrote:The conclusions of ECTRIMS that MS societies have quoted several times was "with the information we have, it cannot be supported that CCSVI is the cause of MS". This conclusion explicity admits the existence of CCSVI.
This next isn't going to be appreciated and is going to seem like a cop out but I think we have to try to put ourselves in the shoes of the MS society administrators through this last year or so due to pressure brought to bear on them by the pro CCSVI'ers. While nothing about the theory of CCSVI is proven, the MS Society administrators can't say anything positive about CCSVI and sure's hell don't dare to say anything remotely seeming negative without good reason and their NOT pointing out continually that the existence of CCSVI remains to be proven shouldn't be construed as acceptance of existence.


frodo wrote: Finally, when you say "Neurologists have no interest in treating vascular problems" you are wrong or right depending what you mean. In Canada they are preventing their patients to get diagnosised for vascular diseases. For sure, neurologist show at least a great interest in controlling how vascular diseases are treated (or not treated).

I'm not a Canadian and I'm not entirely familiar with their medical system but it's obvious from reading about it here at thisisms that the issue is complicated and IN NO LOCATION is the answer as easy as saying that neuros are "preventing" diagnosis nor controlling how "vascular diseases are treated".

The Canadian health care system doesn't recognize CCSVI as a disease so why would neuros send patients for testing for an ailment which isn't proven to exist and how could neuros "prevent" diagnosis of vascular ailments not proven to exist?

I'm not sure how we got to this discussion anyway. I linked to what I thought was an interesting article about ISET with a title that some find inflammatory
The Heart wrote:Should interventionists treat MS? Patient advocacy drives "wildfire" as experts wait for data
I didn't write the damned thing, although I think it's pretty fair.


Beirut ... you guys used to love this study. (remember, all the skeptics were involved in the discussion of it - topic Extracranial venous stenosis is an unlikely cause of MS ... http://www.thisisms.com/ftopic-14530-da ... asc-0.html )

http://www.ncbi.nlm.nih.gov/pubmed/21041329

addressed by this study:
CCSVI exists
CCSVI appears to be associated with MS


unanswered, or not addressed by this study:
It is unknown if it is cause, consecuence or comorbidity respect MS
It is unknown the effect of angioplasty in the MS evolution


NOTICE how the initiator of this thread continues to ignore this study in the posts below - because they aren't "convenient" ... :roll: ... even though he clearly read it.

I wonder what his continued harping on the same points re CCSVI, and trying to sell people that "it isn't proven, it doesn't exist, ..." etc. yada, yada, yada - truly are?
Last edited by CCSVIhusband on Tue Jan 25, 2011 4:59 pm, edited 1 time in total.
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Postby Cece » Tue Jan 25, 2011 3:19 pm

A circle is a circle is a circle is a circle.
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Postby Lyon » Tue Jan 25, 2011 3:33 pm

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Postby 1eye » Tue Jan 25, 2011 3:48 pm

My answer, and it might seem like a smoke screen to some, is that IRs should, and the good ones are doing it, treat CCSVI.

The smoke screeners say that they are really treating 'MS'.

I say that it is a motivation for 'pwMS' to get CCSVI treated, and a happy result often occurs, in that improvement of 'MS' symptoms happens.

You could turn things around and ask if anybody knows any neurologist who ever did anything medical for them that wasn't for 'MS' symptoms, once they had been diagnosed with it. One I had, used to regularly prove to me that, though he was an MD, he *hated* looking into ears, and always claimed he could not see anything because there was too much earwax. My GP told me that was hooey, and that even though I did have a lot of wax build-up she could see in there fine.

They should not generally be treating veins. They are all hot under the collar because treating veins seems to do things for their MS patients that they can't, and because Dr. Zamboni gets along fine with both IRs and neurologists. But what the F**K are they doing saying whether or not anybody should have their veins tested or treated? Should neurologists be treating CCSVI? NO! I wouldn't let one near mine with a 10 foot pole.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Lyon » Tue Jan 25, 2011 4:18 pm

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Postby Cece » Tue Jan 25, 2011 5:11 pm

Should I be nervous that Lyon agreed with me? Perhaps I misspoke. :D
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Postby Lyon » Tue Jan 25, 2011 5:45 pm

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Re: Should interventionalists treat MS?

Postby frodo » Wed Jan 26, 2011 1:58 am

Lyon wrote:
This next isn't going to be appreciated and is going to seem like a cop out but I think we have to try to put ourselves in the shoes of the MS society administrators through this last year or so due to pressure brought to bear on them by the pro CCSVI'ers. While nothing about the theory of CCSVI is proven, the MS Society administrators can't say anything positive about CCSVI and sure's hell don't dare to say anything remotely seeming negative without good reason and their NOT pointing out continually that the existence of CCSVI remains to be proven shouldn't be construed as acceptance of existence.


The MS society does not have to say anything about the existence of CCSVI. The International uni0n of phlebology, which has competencies in this field, already did. Anyway, where I said CCSVI change it for extracranial stenosis, which nobody doubts they exist.


Lyon wrote:I'm not a Canadian and I'm not entirely familiar with their medical system but it's obvious from reading about it here at thisisms that the issue is complicated and IN NO LOCATION is the answer as easy as saying that neuros are "preventing" diagnosis nor controlling how "vascular diseases are treated".

The Canadian health care system doesn't recognize CCSVI as a disease so why would neuros send patients for testing for an ailment which isn't proven to exist and how could neuros "prevent" diagnosis of vascular ailments not proven to exist?


I am not canadian either and my knowledge about the subject comes from reports in this forum. Associations like Angioplasty for all would not exist if they had not this problem. A neuro should not refer a patient to the phlebologist. A family doctor should have that task.

Lyon wrote:I'm not sure how we got to this discussion anyway. I linked to what I thought was an interesting article about ISET with a title that some find inflammatory
The Heart wrote:Should interventionists treat MS? Patient advocacy drives "wildfire" as experts wait for data
I didn't write the damned thing, although I think it's pretty fair.


Well, I am not trying to shoot the messenger. Just writing my opinion about the article. And I think this article has sparked an interesting discussion, isn't it?
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