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

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Postby chrishasms » Tue Nov 24, 2009 8:49 am

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Last edited by chrishasms on Sat Dec 05, 2009 12:48 pm, edited 1 time in total.
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Postby Out2l8 » Tue Nov 24, 2009 9:26 am

Oh brother!! I just read the updated CCSVI info at nmss.org

When you read their position you'd think that CCSVI and any treatments for the condition using balloon catheters, stents and even just getting an MRV to show the presence of CCSVI condition is a complete waste of time!

This is VERY DISAPPOINTING!!!!
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Postby ikulo » Tue Nov 24, 2009 9:37 am

Most of those responses were cautious, yet this one was down right negative.

Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.


Yet, the "about us" section states NMSS's goals as ...

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.

We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

* We are moving research forward by relentlessly pursuing prevention, treatment and cure.
* We are moving to reach out and respond to individuals, families and communities living with multiple sclerosis.
* We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
* We are moving to mobilize the millions of people who want to do something about MS now.


Sounds to me like they have no interest in doing something about MS. Even if they are skeptical about CCSVI, fine. But their position that persons should not get tested is irresponsible and contrary to their stated mission that they want to rid the world of MS. The fact is, we all want to do something about MS NOW. Yet, the NMSS suggests we don't even get tested, testing that has zero negative consequences. If I could think of one thing that was antithetical to ridding the world of MS, it would be to hinder the progress of research, even if that research is done by ourselves and not part of an official pharma funded study. It is so disappointing to hear this coming from them. Almost feel betrayed.
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Postby Mutley » Tue Nov 24, 2009 9:44 am

Sadly, these sorts of responses are innevitable. Sooner or later the facts will speak for themselves though.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby wonky1 » Tue Nov 24, 2009 9:51 am

If there was no more MS,
there would be no more MS Society.
Go figure!
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Postby Loobie » Tue Nov 24, 2009 9:53 am

Mutley wrote:Sadly, these sorts of responses are innevitable. Sooner or later the facts will speak for themselves though.


I agree Mut. You have to remember, until there is irrefutable "proof", (like the CRABS have provided that :roll: ) they can't go out on a limb and support anything that won't pay their salaries! Once, and if, it's proven irrefutably, they won't be able to diss it off without danger of closing down. Right now most of their salaries are paid by advertisements and "co-sponsored" events and the like.

I think if you really take your heart out of it, their response is very carefully worded to not completely discount it. This passage "and it is still not clear whether relieving venous stenosis is beneficial". Looked at in a vacuum, this is absolutely true. I can feel that it's had an effect, but we haven't studied this for long enough to have amassed the type of evidence most people willl buy; especially people with money!
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Postby CureIous » Tue Nov 24, 2009 10:01 am

considering the response in my inbox over on facebook, seems some don't check with the MSS first lol.

I'm just sad that some will read that and say "case closed" without investigating further. Hopefully Lew is right but we are reading between the lines, most won't.

Just seeing the avalanche of responses on Facebook should give us all pause...

Mark.
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
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Postby kjwxau » Tue Nov 24, 2009 10:14 am

I don't fault the MS society for being cautious. What I would have like to have seen was the Canadian societys response which was we have some cash send us your research parameters. I just got off the phone with my GP. As Im tell him about the research he is on his computer and brining up article after article reading out loud to me. I could hear the cogs in his brain turning. Just as I was going to tell him about something he is reading it to me. He said "please don't sign up for any surgeries without telling me". Like I thought, he also said you have to go to someone who is familiar with the procedures to get the right reading. It made want to cry that he was interested after my with my neuro totaly blew me off.He had some valid questions that I am going to try to get asked. How many stenting procedures at SF and are they being tracked?
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Postby Arcee » Tue Nov 24, 2009 10:32 am

a couple of different points:

kjwxau, I had the stent and found my PCP to be just super. My neuro, to his credit was as supportive as I could have expected. Check out "sticky" tracking thread for some details. I am not sure what the latest estimate of numbers treated are - - perhaps someone who recently was there knows what number they were and we could guess. (And the folks at Stanford are doing their own official tracking, of course.)

As for the NMSS, it seems like one way to "encourage" them to be encouraging would be to make sure their key (individual) donors understand the potential of CCSVI. More learning is a good thing, they should be for that and help move along testing and clinical trials.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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