This Is MS Multiple Sclerosis Community: Knowledge & Support

Since the skeptics have their own thread going on about how and why they are critical of CCSVI ... I figure it's time for the people with personal experience to have their own thread.

Though this is started tongue in cheek ... I think it's important, because I don't think the "skeptics" understand that what they term as "believers" are believers for a reason.


The first thing I'd like to point out is ...
WE HAVE PERSONAL EXPERIENCE WITH CCSVI.
IF WE SAY, WE HAD RESULTS IMMEDIATELY AFTER LIBERATION THAT HADN'T BEEN PRESENT FOR DAYS/MONTHS/YEARS BEFORE LIBERATION ... THEY ARE REAL.
YOU CAN'T ARGUE IT BECAUSE YOU HAVE NO PERSONAL EXPERIENCE TO VALIDATE THE CLAIMS, AND YOU CAN'T WALK A MILE IN OUR SHOES.

As more and more people make the same kind of claims, don't you think they'd catch on and say ... wow, that's so many people and YouTube videos showing the same thing ... there might really be something to this!?!

Oh well ... laggers will be at the back of the line when everyone wants liberation someday soon.

OK, my feistiness is gone for the day now.

http://www.hs.fi/english/article/Finnis ... 5261653643

1 person with experience

http://news.scotsman.com/news/New-proce ... 6626119.jp

2 people with experience (wait, they're not from the same country, they couldn't have worked together, how did they get similar results)

http://www.globalregina.com/Liberation+ ... story.html

hmmmm ... this is all very suspicious.

Sometimes I think I have a split personality, one could post here, the other one on the sceptics thread.

I don't think there's such a thing like "healthy scepticism". Scepticism is an absolute way of thinking. Either you question things (scientifically), or you don't. Questioning things "a bit" (again, scientifically) is like being slightly pregnant.
On the other hand, what's considered healthy is very relative, consisting of comparison, common sense and average. So, if you say you're scepticism is healthy, it's like saying "I'm relatively absolute.".

A much more precise picture is that there are two conflicting opinions in my mind existing side by side. While I understand the importance of strict scientifical approaches, I also see the many personal experiences that are compelling to me.

The only way out of this dilemma is to draw the conclusion that it's futile to think in terms of a general "right" or "wrong". Each case is different and every decision must be made individually.

But what derives from that is the understanding that it is plain wrong to judge another one's decision.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

*Some*body around here said:

"YOU CAN'T ARGUE IT BECAUSE YOU HAVE NO PERSONAL EXPERIENCE TO VALIDATE THE CLAIMS, AND YOU CAN'T WALK A MILE IN OUR SHOES."

What about a wheelchair? I'm a size 11. I think that people can (and do!) argue plenty about stuff they have no personal experience with, or else lawmakers could never outlaw murder...

"I'm an American, and I don't have to see something to know it's stupid." -Tom Smothers

"If I had a million dollars, I'd be rich." -Barenaked Ladies

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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

Some more excellent personal experience reports:

http://www.youtube.com/watch?v=TmwWltr-1E8
http://www.youtube.com/watch?v=dlBz_wWb ... re=related
http://www.youtube.com/watch?v=b3GK2jFD ... re=related

http://www.cottagecountrynow.ca/news/ar ... -a-success


Another one ... how silly.

I can't see these at work ... but I'm "skeptical" of their results ...

Bingo.

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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

look people, we don't have to keep on pushing 'sides'.

TIMS members are here for themselves and/or for loved ones and all are equally welcome, even though their personal experience of MS may be as a caregiver rather than a patient. can anyone here imagine someone giving cheer a hard time because she has no personal experience of ms?

our members have different attitudes regarding this new technology for treating MS. and that is exactly as it should be. please show respect for the contributions of other members. we are pleased to see both the good news stories and sorry to hear the bad news stories but all have merit. TIMS is an unbiased site and therefore we would be failing in our mission without a diversity of perspectives.

Reposted:

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I have a postive personal experience with balloon venoplasty. My study informs me that I undertook minimal risks in seeking this procedure.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I now have the personal experience of undergoing a doppler ultrasound examination and an MRV. Both showed signs of CCSVI. I look forward to the personal experience of venoplasty and, hopefully, the personal experience of feeling better.

I think clinical observations are a step up from anecdotes but a step down from research trials. We have a number of respected, intelligent CCSVI doctors who have made and shared their clinical observations.

Okay, I'm not posting this to stir but I think we have to understand why the neurologists at large are not yet convinced of the efficacy of ccsvi treatment.

Anecdotal evidence is interesting but from a scientific point of view doesn't prove anything http://theness.com/neurologicablog/?p=174

From personal experience, my wife when she started Tysabri felt more energised and had no relapses for 12 months. The only niggle was an allergic reaction when she received it. We sung the praises of tysabri as she had never been better. Our neurologist at 12 months ordered an antibodies test and it transpired she had antibodies to tysabri and had most likely received no benefit at all from day one. Such is the difficulty with MS in taking personal experience as proof.

Irrespective, I don't think we are far away from hard proof. We appear to have some solid evidence showing CCSVI exists. Hopefully controlled studies of treatment will show the breakthrough we all want to see.