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

Postby euphoniaa » Mon Aug 08, 2011 2:00 pm

erinc14 wrote:there are skeptics on every message board because they have nothing to do and are losers .


Excuse me????? That's ridiculous.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby ozarkcanoer » Mon Aug 08, 2011 7:39 pm

dania, I have been around TIMS/CCSVI off and on since October 2008. Very early on I was PMed out of the blue by a disgruntled person who thought the tone of my posts was not up to his liking. Actually I got several PMs and stupidly I responded since I truly wanted to know what I had said to upset him and why it I was so "clueless". My feelings were very hurt. I was also quite new to internet chat and message boards that are really the wild wild west. The lesson I learned is to ignore such things. There is often good reason to PM, but often it can be abused.

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Postby fee001 » Mon Aug 08, 2011 11:49 pm

Darnia

I do not usually encourage naughty behaviour, but I know how a stressful or upsetting experience can have a not very nice affect.

What I would and probably have done in the past on a different forum is not waste my time or energy responding in any way. But smiled to myself and moved on. Probably sticking my tongue out at the same time, or something similar, the prevoker totally unaware of my response at all as I sit here in my own home, knowing that they wouldnt even get down my front path let alone in my front door.

And having that knowledge and in not taking the bait makes me feel and will make your friend feel a whole lot better.

Water off a dux back, water off a dux back.

Fiona
Last edited by fee001 on Tue Aug 09, 2011 9:12 am, edited 1 time in total.
I do my own research, and find my own answers Its good to talk
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Postby dania » Tue Aug 09, 2011 6:49 am

ozarkcanoer wrote:dania, I have been around TIMS/CCSVI off and on since October 2008. Very early on I was PMed out of the blue by a disgruntled person who thought the tone of my posts was not up to his liking. Actually I got several PMs and stupidly I responded since I truly wanted to know what I had said to upset him and why it I was so "clueless". My feelings were very hurt. I was also quite new to internet chat and message boards that are really the wild wild west. The lesson I learned is to ignore such things. There is often good reason to PM, but often it can be abused.

ozarkcanoer

Thanks for your support. It boggles my mind when some take everything, as being challenged.
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Postby Cece » Tue Aug 09, 2011 8:30 am

euphoniaa wrote:
erinc14 wrote:there are skeptics on every message board because they have nothing to do and are losers .


Excuse me????? That's ridiculous.

Maybe a better word (than skeptics) would have been trolls, because not all skeptics are trolls, but there are indeed trolls on every message board.

Dania, you are not a troll. A troll is deliberately trying to inflame, for the fun of it. You've had an awful experience with CCSVI, about as bad as it gets, at a time when the belief here was that CCSVI could make you better or leave you the same but not make you worse.

I am not a troll. I rather like harmony, not fighting. I am here because I enjoy Dr. Sclafani's thread, I like discussing the latest as it comes in, I'm going through my own CCSVI journey, I try to help others, and I have a pretty good memory for all things CCSVI.

Last fall, I kept starting threads about clotting and the loss of jugulars, because it was shocking and a risk we hadn't known about in the beginning. If I thought CCSVI was precious and perfect, I wouldn't have been starting those threads and drawing people's attention to the risk.

I welcome you drawing attention to the risks. We need a discussion of it but it needs to be an accurate discussion and that is where we fall out.
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Postby euphoniaa » Tue Aug 09, 2011 9:10 am

Cece wrote:
euphoniaa wrote:
erinc14 wrote:there are skeptics on every message board because they have nothing to do and are losers .


Excuse me????? That's ridiculous.

Maybe a better word (than skeptics) would have been trolls, because not all skeptics are trolls, but there are indeed trolls on every message board.


Erinc14 said "SKEPTICS", not trolls. I'm still pissed about it and there's no excuse for it. And who the hell insinuated that Dania was a troll? :)

Dania, keep posting however you want and I wish you the best. I'm so sorry that you had such a bad result from the CCSVI procedures. I agree with this comment you made earlier.

Dania said:
I do not think most people (here) are against CCSVI. I think most would agree that there is something to it.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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