Two month update

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

Postby concerned » Mon Nov 29, 2010 11:34 am

CCSVIhusband wrote:But since they are "skeptics" they won't admit it for whatever reason. Be it financial gain (potentially in the case of Colin Rose, or if they have a job - neurologist or drug company marketing manager that CCSVI would potentially impact), or be it sheer ignorance.




What financial gain is Colin Rose potentially receiving by running a free word press blog?
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Postby scorpion » Mon Nov 29, 2010 11:37 am

CCSVIhusband wrote:^ let them keep believing these things and digging their own graves that they will have to lie in one day when we get to all say "I told you so" ...

I have a sneaking suspicion deep down they know it's not placebo (there are too many accounts of the same thing at this point, people who have had the same symptom for years with nothing helping, then they are liberated and it is gone). I also have a sneaking suspicion that they know there is something to CCSVI ...

But since they are "skeptics" they won't admit it for whatever reason. Be it financial gain (potentially in the case of Colin Rose, or if they have a job - neurologist or drug company marketing manager that CCSVI would potentially impact), or be it sheer ignorance.

As more and more accounts tell the same story though, do you notice they've gone from "skeptic" to hard entrenched in their "opposition" and keep digging their grave deeper and deeper, making it harder to one day climb out of? They keep pointing to the same 5 or 6 stale arguments ... we're all seeing through them more and more, and they aren't holding the same water they once did.

2011 is going to be a big year for CCSVI ... :lol: ... and so will 2012, 2013, 2014 ...


I have no idea whether the improvements are a result of the procedure or placebo so therefore I am not entrenched on either side. All I am saying is that it is something to consider. You on the other are absolutely convinced that the improvements are a result of the procedure so if I am not mistaken you are the one entrenched. Since you do not have MS you would not undertsand but to say any of us with the disease do not want a treatment to be effective is crazy. Really I think you should be thankful for us skeptics because it is becoming quite apparent without us you would be leading a pretty mundane life.
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Postby jgkarob » Mon Nov 29, 2010 12:08 pm

You know, you've spent no real time in the wonderful world of MS and yet, you write some really unfair and unpleasant observations about people who have MS.
You jump up and down on any discussion here. This used to be a great message board. TIMS, the place to go for really decent discussion about MS.
Instead it's just stressful post after post about how you are defeating these awful sceptics.
Have you not an ounce of compassion - if not for the readers who haven't been tested, but for people for whom this procedure hasn't worked?

You've provoked me out from lurkdom into posting this because finally, you've just gone too far.
You have a life. Lucky you. You don't have MS.

It's not a war. Stop it. Discuss by all means, but why are you constantly allowed to get away with remarks which would be removed at a more civilised forum than this one has become.

It must be so nice not to have MS and tell all of us who do, just how to fix it.
MS is a more complex disease than you imagine it is and how do I know?
I've been living with this sod of a disease for over 15 years and I've read and read as much as I can.
The more I read, the more complex it becomes.
Please. Give it a rest? This is not a warzone. But it sure as hell feels like one.

CCSVIhusband wrote:^ let them keep believing these things and digging their own graves that they will have to lie in one day when we get to all say "I told you so" ...

I have a sneaking suspicion deep down they know it's not placebo (there are too many accounts of the same thing at this point, people who have had the same symptom for years with nothing helping, then they are liberated and it is gone). I also have a sneaking suspicion that they know there is something to CCSVI ...

But since they are "skeptics" they won't admit it for whatever reason. Be it financial gain (potentially in the case of Colin Rose, or if they have a job - neurologist or drug company marketing manager that CCSVI would potentially impact), or be it sheer ignorance.

As more and more accounts tell the same story though, do you notice they've gone from "skeptic" to hard entrenched in their "opposition" and keep digging their grave deeper and deeper, making it harder to one day climb out of? They keep pointing to the same 5 or 6 stale arguments ... we're all seeing through them more and more, and they aren't holding the same water they once did.

2011 is going to be a big year for CCSVI ... :lol: ... and so will 2012, 2013, 2014 ...
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Postby blossom » Mon Nov 29, 2010 12:18 pm

captboo, i really am happy to hear you are doing so well. thanks so much for posting. i wish you more continued healing.

this is something how you had no blood thinners etc. and are doing so well "which is great to hear" while some like myself just don't have as good of an outcome for whatever reasons.

so, we are all so different, but with outcomes like yours it is very interesting how this is playing out. soon, i hope since more and more are getting treated and their outcomes are being studied they get this figured out so we're all free of this miserable disease.

again, i wish you the very best.
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Postby CaptBoo » Mon Nov 29, 2010 2:12 pm

Blossom, I always appreciate your kind posts. When I was first told I might have MS, I knew nothing about it. And then reading all the usual material, it just did not feel right for me. Auto-immune just did not make sense. Copaxone, no help; Avonex tried to kill me Then I read about a viral component, that made more sense (I was in southeast asia in the early seventies). I tried a month of hyperbaric oxygen, nothing for me, but a lot for some people. My wife stung me with bees, nothing. (It seems if I was prone to placebo, I would have gotten it from one of those thing.) I believe they will find a number of different models that point to different routes to relief. After spending $20,000 on neurologists I would like to say something nice about them, but I can't. At least now there is some other direction to look than EAE mice, which also never made sense to me. And even if there is nothing to CCSVI other than helping me, at least MS is making the paper regularly and money is being spent looking in other directions.
<div>There be no dragons   ...Reese Palley</div>
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Postby blossom » Tue Nov 30, 2010 6:07 pm

captboo, i agree so much with what you just said. instead of the same old beat of the drum the neuro.'s throw our way finally there are more doors opening. although, we better have a strong doorman holding that door open because main stream does not like what is going on.

bottom line, all doctors need to start listening to their patients better.

there are too many of us with ms "i call it multiple symptoms" that do not get the same results from the same treatment so how can we all have the same thing? if we did then more would be getting the same results from doing the same thing. so, it is no stone unturned.

sounds to me that your life story would make a very good movie. let's have the ending be that you are sailing again "free of ms."
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