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

Postby mrhodes40 » Sat Jul 25, 2009 12:58 pm

MS patients walking around with the dx are not the same as a group allowed in to a trial, Cheer has it, they screen carefully to make sure they deal with classic CDMS.

If this is pathognomic for MS it will be in 100% of MSers.

If this is the cause of ms MS it will be in every MSer.

I understand being afraid to believe it can be real, but insisting that there has to be people who get into the trial who are not actual MS patients in order to "prove" the research is legitimate is really an odd point of view.
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Postby Lyon » Sat Jul 25, 2009 1:07 pm

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Postby chrishasms » Sat Jul 25, 2009 2:15 pm

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Postby chrishasms » Sat Jul 25, 2009 2:24 pm

What I can't get Bob is why you say nothing for weeks at a time except for to play Devils advocate or to piss in the corn flakes. Are you trying to prove misery loves company?

I just don't understand.
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Postby Lyon » Sat Jul 25, 2009 2:40 pm

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Postby mrhodes40 » Sat Jul 25, 2009 3:01 pm

coy? no. tired of this? yes.

I understand the point but don't agree it is impossible to screen out MS mimics.
[we are currently technically incapable of insuring that anywhere near 100% of the people diagnosed with MS really do have MS.

HERE is a paper that took a big batch of MS patients and put them in 3 groups. CDMS, a probably MS group, and a group of probably mis diagnosed persons.

the point is that a lot of the random MS population had other things going on which you have pointed out repeatedly and correctly....

MY point is that they were able to identify a large group of CDMS-people so classic and textbook right for CDMS that their diagnosis is not in doubt.

Obviously if you are doing a study you choose only people who fit that classic profile with no question at all as to diagnosis. You just don't take the odd presentation; people with no OCB, no repeat attacks etc etc.

Once you do that if "classic CDMS" is caused by CCSVI then all of us would have it, just like all people with ischemic heart disease have blocked arteries.

all that having been said I'll agree that they'd have to be very good to not let one in accidentally, and I'd like to see them say a little more about their inclusion criteria, and how they accomplished perfect exclusion.

Can we be done now?
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 Lyon » Sat Jul 25, 2009 3:18 pm

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Postby chrishasms » Sat Jul 25, 2009 3:24 pm

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Postby marcstck » Sat Jul 25, 2009 3:26 pm

Welcome or not, I'm going to throw in my two cents here...

When discussing CCSVI with the neurologist at NIH, she specifically noted that the fact that Zamboni is finding stenosis in 100% of MS patients throws up "huge red flags" about this research. As Bob has said, given a large population of people with a clinical diagnosis of MS, you will certainly have within them a significant percentage of people who have been misdiagnosed.

This is coming from people who know, as they have probably run more trials on MS patients than any other organization. As a matter of fact, the trial that I'm in is an attempt to stringently screen people for those with a definite diagnoses of MS for use in further studies, because the MS misdiagnosis phenomenon muddies the waters of many research studies...

Incidentally, my diagnosis is very much in question. The consensus seems to be that I don't have MS, but some mystery diagnoses. My presentation seems to be atypical for not only MS, but all of the other likely candidate diseases. I have some of the best minds in the business scratching their heads...
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Postby ForeverSpring » Sat Jul 25, 2009 4:13 pm

I like objective science, too, Bob.

Regarding the nearly 100% positive study results when it’s impossible to supply a 100% certain MS study population -- I have wondered about that myself, although my personal experience inclines me to believe that chronic venous insufficiency is associated with my MS.

It also seems highly unlikely that 100% of people diagnosed with MS were born with crimped jugulars. The only way to be certain of that would be to have pictures of the jugulars of every MS patient from birth. Congenital malformation may be the case with some, but it is probable that others gradually developed the tortuous, swollen veins over a period of years due to other factors.

Dr. Roy Swank and other physicians saw these twisted, swollen veins in MS patients many years ago. Dr. Swank, in particular, based his largely successful treatment of his patients on these observations. They are not a new discovery. What is new is the stent treatment to relieve symptoms.

Although installing stents may relieve some MS symptoms, those stents require lifelong maintenance, repair, and further surgery. The stents will probably not cure MS, whatever MS may be. If something is causing the formation of varicose veins in the head or anywhere else in the body, and the cause is not addressed and corrected, tortuous veins will continue to develop, causing further symptoms.

Those who have chosen to have the stent-placement surgery have done so in order to gain relief from some miserable MS symptoms. Thankfully, they seem to have some relief. However, there is still a long way to go before we have a cure.

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Postby Lyon » Sat Jul 25, 2009 4:30 pm

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Postby LR1234 » Sat Jul 25, 2009 4:47 pm

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Postby marcstck » Sat Jul 25, 2009 4:56 pm

The study I'm in at the NIH involves three separate visits to Bethesda, each of which includes MRI imaging using both 1.5 T and 3T machines. They're also doing lumbar punctures, lymphopherisis, evoked potentials, and cognitive and functional testing. In short, they are going to terrific lengths to determine which patients might qualify for future MS studies.

I'm pointing this out only to illustrate the difficulty of properly identifying patients as having clinically definite MS, and the unlikelihood, without going through such measures, of finding a 100% positive result for anything in a population of MS patients that hasn't been so diligently screened.
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Postby peekaboo » Sat Jul 25, 2009 5:22 pm

healthy skepitism is good but we must mind our manners...Skeptism helps find questionable statements/data etc. so the researchers can regroup and look at the study to close the gap.

Please be tactful in one's rebuttle to evidence etc. we are all human and can get easily hurt by the sounds of fighting words. The only fight here is the fight to combat MS...It is the ONE cause of this wonderful site.

Peek

PS it is almost like a discussion of religon and politics YUK :twisted:
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Postby Lyon » Sat Jul 25, 2009 5:30 pm

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