as patients worsen, they turn to internet for information

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

Re: as patients worsen, they turn to internet for informatio

Postby 1eye » Mon Nov 07, 2011 2:40 pm

If anybody is even pretending to be able to cure "MS" I'd like to hear, see, write to politicians about it.

DMDrugs are not just for this year. They don't work on the veins at all. I (and I suspect many other Canadians) couldn't get a DMD treatment, even though it is covered by private insurance, even if I were to beg. I am not even asking any more. Doctors have to have a lot of nerve to prescribe anything that costly, but since they can, some do, and they are well compensated.

Money can't buy everything, but there's a sale on thick skins. They come with free Internet service too.

This is nothing but the same tired old party line about "desperation." My neuro told me I was "grasping at straws." Actually, though, some act as if they hate to tell you the "truth", when that is really what gets them up in the morning. All the many mysterious wonders we don't know how to treat.

I admit to everything. Take me away, I'm guilty. I was foolhardy, and had the procedure on my own nickel. I tasted the forbidden treatment. I read all about it on that bad ol' Internet. Please, you have to confine me: I just can't help myself.

:smile:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: as patients worsen, they turn to internet for informatio

Postby David1949 » Mon Nov 07, 2011 9:47 pm

1eye wrote:If anybody is even pretending to be able to cure "MS" I'd like to hear, see, write to politicians about it.



Considering the price they charge for the DMDs they should not only cure you, but make you ten years younger too. :smile:
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Re: as patients worsen, they turn to internet for informatio

Postby frodo » Mon Nov 14, 2011 1:37 pm

Sunnee wrote:To be directed to ccsvi by the internet is very very dangerous, there is a massive amount of money being made out of ccsvi, and in my opinion is not the answer, the narrowing of blood vessels do exist but because of a cervical spine (neck) issue.

Hopefully this will soon be realized with the upright MRI. yes there will be some benefits re widening, but it wont address the issues of further misalignments caused by knock on effects of the initial problem in the neck. Atlas adjustment increased my blood flow significantly.

I'm sticking to UCC, its working for me and it will do for many others too and its permenant


Maybe in your case your cervical spine was the source of the compression, but it probably does not apply for other MS patients. Cases like yours confirm the general view that blood flow impairment, independently from its cause, can cause MS.

Is Internet a dangerous source of information? I don't think information can be dangerous at all. It is true that an incomplete information can be a danger, but normally people will take a good look at all the available sources before getting involved in an invasive procedure.
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Re: as patients worsen, they turn to internet for informatio

Postby CureIous » Mon Nov 14, 2011 10:38 pm

frodo wrote:
Sunnee wrote:To be directed to ccsvi by the internet is very very dangerous, there is a massive amount of money being made out of ccsvi, and in my opinion is not the answer, the narrowing of blood vessels do exist but because of a cervical spine (neck) issue.


Is Internet a dangerous source of information? I don't think information can be dangerous at all. It is true that an incomplete information can be a danger, but normally people will take a good look at all the available sources before getting involved in an invasive procedure.


Now we cannot have the patients running amok educating themselves on such a complicated subject. Luckily the thought police are on patrol 24/7 to assist in this endeavour, aiding patients as to the proper methods of research, whom to listen to, whom to ignore, bullet points and the like.

Us "Stanforders" were indeed, the most dangerous people out there, as the knowledge base was quite sparse, at least to make any kind of decision on an invasive procedure.

As you say however, we did look at all the available sources, and most of us have few regrets, and we know much about those that did have regrets and why. There were no minefields back then, no videos, no competing venues for our business, and most importantly, NO POLITICS. I've stated before and will say again, I do not envy the decisions people are having to make today, given all the conflicting data, various biases based on whatever for and against everything imaginable, but hey, at least they got stuff to look at and compare!!! Huzzah!


I give patients credit. Let em look at all the info and make their own damn minds up. Good bad ugly and otherwise, and the ONLY way they get that, is with the scope and breadth offered across the full spectrum of the internet, not just one site or one video or one paper or one message board.
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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Re: as patients worsen, they turn to internet for informatio

Postby fee002 » Thu Nov 17, 2011 2:54 pm

:-D
Last edited by fee002 on Thu Nov 17, 2011 8:12 pm, edited 1 time in total.
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Re: as patients worsen, they turn to internet for informatio

Postby Cece » Thu Nov 17, 2011 3:58 pm

fee002 wrote:curIous,


I think you got a bit mixed up and misquoted Sunnee.

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