This Is MS Multiple Sclerosis Community: Knowledge & Support

then i will pray for your children.

me, i would check them for CCSVI and maybe just maybe STOP MS BEFORE IT EVER STARTS

Exactly....
Patients also brought research papers from the internet to their IRs, back in 2009 and 2010, and that's what brought CCSVI to the attention of the IRs.

IRs speak the language of CCSVI (occlusions, angioplasty, luminal abnormalities, perfusion, elastic recoil, reflux, focal hypertension, venous congestion, CSA, ivus, diapedesis). Neurologists still don't speak the language.

edited to add: what I meant by agreeing with sou was that we'd compiled the research papers and everything relevant faster than it had receached the IRs who would then become our CCSVI researchers. We contributed to the process, we were the first to step forward to say, ok, unblock my veins. Not that it was internet evidence such as anecdotal evidence. We pushed this forward, we raised awareness, and good trials will be underway years earlier than they otherwise would have been, and that is a good thing, because we will get answers. Has everyone read Dr. Shannon's interview about the Canada trials? Dr. Shannon is a very good spokesperson and comes across as having a deep knowledge of trials and being relatively neutral about CCSVI, so it is all a matter of getting appropriate trial protocols that will answer the questions that we all still have. I know enough about CCSVI to know we have more to learn, and that trials will give us some of the answers.

Nah I dont think so.

That's not fair. Dr. Tucker points out that there is more than one kind of, and goal of research, and what we are asking for is better than interferon, at least in the short term. People have to do all kinds of research, because we not only need to know what's wrong, but we also need to know the best way to fix it with the available money. Not many are under any false delusions about how wonderful interferon is. I've survived without it. It is, though, one of the first things in the long history of the ailment, that was proven to make any difference in the short or long, in "MS". Better than nothing is a good first step.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Internet evidence will not stick without strong scientific evidence to eventually back it up. Although some researchers/people will never back down from their beliefs even in the face of a mountain of evidence refuting their position due to their egos, the majority of people will see it for what it is. So either CCSVI will go the way of the dinosaurs(or maybe Elvis since some people do still believe he is alive) or scientific studies will prove its validity however so far it is not looking to hot.

Internet is a medium of collecting information. IMHO, it's the largest medium of its kind. Isn't it expected for somebody that keeps going downhill following his/her neurologist's advice to seek more information? Where would somebody look if not the Internet?

@1eye: No, interferon has never been proven to prevent disability. It has been proven that it may decrease the number of relapses in some patients. Personally, I wouldn't take a drug that prevents nothing and makes you feel like sh*t all the time.

Re CCSVI, I wish it goes the way of the dinosaurs, because given the prehistoric age of MS research and treatment, dinosaurs will soon be the dominant species.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

7 out of 8, 87.5% of ms patient in an upright mri study reported having trauma in there life before being dx'ed with ms. like me i fell from tree when i was 10, 15 years later i get dx'ed with ms. might be different time frame for every one because every ones trauma is different

me personally would take my kids to get checked out with any kind of head/neck trauma by a Upper Cervical Care dr, i wouldnt wait till they get diagnosed, prevent ms or any neurological disease from happening; but if for they developed ms still, i would do test of Lyme and Candida then if they still had symptoms ccsvi.

Of course pointing out misinformation on TIMS can result in negative consequences but here goes anyway:

http://www.medscape.org/viewarticle/561006




.

http://www.everydayhealth.com/health-qu ... t-provigil

from the first research link scorpion posted:

I couldn't find the ASSURANCE trial in google scholar. Only articles talking about it, but not the actual study. According to this, though, 24% of the other patients were taking Tysabri when recruited for the study. So, the average patient who has been taking Avonex is healthier than the average patient who has been taking Tysabri? This can be explained by selection bias: the patient who chooses to go on Tysabri is worse off and has a more severe form of MS.
http://www.drugs.com/clinical_trials/ne ... -5592.html

ASSURANCE was a retrospective trial. Prospective trials are more informative.

Sou wrote:



Sou, your statement is in total agreement with a recent article on Pharmacological Treatments in MS, in Issue 18, 2011 of "MS in Focus", published by the Multiple Sclerosis International Federation (MSIF)

I think you have to download the pdf, the following quote is taken from page 6 of that issue.



Take care all....rock on!

Sharon

..

No causal relationship between obstructed blood flow caused by venous narrowing and multiple sclerosis (MS) was found in a combined MRI and ultrasound study, German researchers reported.

Chronic cerebrospinal venous insufficiency has been proposed as the causal trigger for MS development. However, there is no gold standard for venous flow assessment, and current data are contradictory, said Florian Doepp, MD, of Charité University Medicine Berlin and colleagues in the Nov. 8 issue of Neurology.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

http://www.eurekalert.org/pub_releases/2010-08/w-nsq080210.php

I already used the "look ma" line in the last "neuro imaging study of the week."

Since Doepp is a repeat muckraker, I'll let his previous work speak as to motivation.

Not sure how buddying up to these types of antagonists or varying our ccsvi verbiage does anything for the VAST majority of neurologists dead set on margianalizing us with "conclusive" findings.

Anyone think that will sway Doepp from publishing his studies "until further studies can be undertaken?"

What about Stanford neuros? How far has that tact (as patients and advocates) gone there? 2012 coming up mighty quick, we can't even get decent MEDIA coverage.

The disservice continues. Back in 2009, this kind of talk was hand-waved back into conspiracy land with nary a thought, now, its just status quo reality. I was there, I remember. (new veins and all )

I don't envy IR's one bit trying to navigate around these smoke and mirrors roadblocks

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

And brain lesions, used to determine efficacy of drugs in trials, can randomly come and go in healthy subjects.

This 15 person study (anyone else using only 15 people in a trial to determine much of anything will get slammed for their conclusions) brought on the result "unlikely to cause" terminology in their report. Yep, use only 15 people and nothing much can ever be proven especially when it comes to a disease like MS.

Geez Bob, it really is unfortunate that some researchers are running around trying to disprove other research work by conducting trials on such a small number of healthy subjects in a limited manner. Like I said months ago, the wagons are being circled to protect reputations.

Harry