Wow, has this forum gone everywhere lately?

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

Postby ozarkcanoer » Sat Jan 02, 2010 4:21 pm

I agree that there are many off-topic threads and newbies all with the same questions since the CTV W5 documentary. But I remember when I was a newbie, not so long ago. I got so excited by CCSVI and jumped into it with my eyes closed thinking I could change the world, LOL. Well, I'm still trying and I welcome all the newbies and their questions. It is exciting to see all the newbies immediately getting appointments with Dr Simka while I am still debating whether I should get an MRV in St Louis as my neurologist suggested, or just to wait for Dr Haacke's assistant to finally give me a new date for Detroit. And I still have nagging doubts about CCSVI that I hope that the Buffalo "first 500" will alleviate !!!

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Postby prof8 » Sat Jan 02, 2010 4:42 pm

Lyon wrote:
With it in mind that all iron deposit imaging is still of questionable validity, as is "damage" caused by excess iron, it seems ironic that this example is raised as "kookie" at this particular juncture because blood letting really remains the accepted method of lowering blood iron content and does seem to suit that purpose very well!


But what about all of those people who have MS but also are anemic? I'm always slightly anemic on blood tests and was told by my doctor that I have an extremely low iron (ferritin) store. Yet according to the MRV testing done at Stanford I have 90-95% stenosis in both lower jugular veins, some stenosis in the upper left jugular vein and plenty of black holes and lesions on my brain. All this talk about chelation, blood letting etc. sounds a little wacky to someone like me who needs to hang onto all the iron I have in my blood--I can't imagine getting any paler or lower energy than I am!!
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Postby cheerleader » Sat Jan 02, 2010 4:52 pm

prof8 wrote:But what about all of those people who have MS but also are anemic? I'm always slightly anemic on blood tests and was told by my doctor that I have an extremely low iron (ferritin) store. Yet according to the MRV testing done at Stanford I have 90-95% stenosis in both lower jugular veins, some stenosis in the upper left jugular vein and plenty of black holes and lesions on my brain. All this talk about chelation, blood letting etc. sounds a little wacky to someone like me who needs to hang onto all the iron I have in my blood--I can't imagine getting any paler or lower energy than I am!!


Hey prof-
good point. I think the best advice is patient, know thyself. Blood letting (with leeches or by any other means) would not be advised for you...
the larger point is, you now know you have jugular stenosis. And that's what Dr. Zamboni found in lots of MS patients, too.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sat Jan 02, 2010 4:57 pm

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Last edited by Lyon on Mon Nov 21, 2011 9:05 pm, edited 1 time in total.
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Postby jay123 » Sat Jan 02, 2010 5:35 pm

scorpion wrote:... I am just hoping I dont get on thisisms one day and see a forum entitlrd "the big pharma's MS conspiracy". Then I know this forum is in trouble! :lol:


Hate to break the news to you -

1- title - No Conspiracy Theory Comes Close
http://www.thisisms.com/ftopict-9357-pharma.html


2- title - Finding cures is not even remotely a consideration by pharma
http://www.thisisms.com/ftopict-9163-pharma.html


LOL
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Postby scorpion » Sat Jan 02, 2010 6:27 pm

Appreciate the reference Jay. I am a defeated man. :?
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Postby tazma » Sat Jan 02, 2010 6:35 pm

patientx wrote:By the way, this was posted recently on another MS website:

I have somewhat noticed a theme of CCSVI supporters being the types who believe in drug company conspiracies, and even that the NMSS is part of a conspiracy to put the brakes on potential MS cures.

On another forum I visit sometimes that I would call kook fringe alternative there's a woman who's talking about doing blood letting to expedite removal of Iron from her brain.


I saw that post on another site, I wouldn't pay him much attention, he's negative on almost any new idea and spews opinions without facts.

If he or others share that opinion, well not much you can do. You can't mold this site to make people like that happy.

As a newbie to this site, I feel you've done a great job here. As thisisms continues to grow, the threads might appear off topic to old timers, but I guess that's to be expected.
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Postby Brainteaser » Sat Jan 02, 2010 8:36 pm

Jay,

Looking back, you raised these same thoughts in another thread you started on 17 December. Why did you not just continue with the earlier thread? This seems to be the core problem at the moment. So many threads over-lapping or repeating - no basic order.

But I think you're right - however it needs someone to take charge and it seems that the administrators are OK with how things are.

I got your name wrong on the other thread - I thought it was Theresa and not Jay, and I don't know your gender, but I stand by my earlier comments which weren't challenged.

Hi Theresa,

You are a brave girl in raising this subject..........but I agree; you are basically right - we definitely need a thread nazi around here to organize things a bit better - maybe this can be a holiday job for NHE.

Even before the Canadians came out of hibernation, we were starting to have problems in finding the good stuff amongst all the other. There would be a new thread for almost anything. We seem to have about 1000 threads now - I hate to think what will happen next year if CCSVI really gets going - the whole board will probably implode!

One objective should be a board where we can refer neuros and vascular surgeons and so they can readily find things. A well organized setup around here might stop doctors from falling into the clutches of the skeptics.

NHE - without trying to steer things too much, perhaps there should be some sort of hierarchy or categorization of threads - a special area for peoples' post-op discussions, for each treatment centre, meet-ups etc etc - you know the drill. No one wants to stifle personal expression but we need to keep the big picture in mind - and when I read all the junk from Compston and the like, it's going to be all important for ThisIsMS to work like a well oiled machine.

Phil


Since then we've had about 100 new CCSVI threads started and it's only holiday time! Do we really need new threads for when someone scratches themselves or sees someone or someones's birthday? I'm being tongue-in-cheek and Oz irreverant, but you know what I mean. As new news-grabs and tv reports of CCSVI are aired, especially in the US, this very fine and much valued facility will become totally uncontrollable.

Phil
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Postby jay123 » Sat Jan 02, 2010 9:28 pm

awww Scorpian you're OK, you'll get over it! :D
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Postby jay123 » Sat Jan 02, 2010 9:31 pm

Brainteaser wrote:Jay,

Looking back, you raised these same thoughts in another thread you started on 17 December. Why did you not just continue with the earlier thread? This seems to be the core problem at the moment. So many threads over-lapping or repeating - no basic order.
...
Phil


Phil,
No the purpose of my first thread was as you said people were double posting threads..
The purpose of this thread is the number of off topic threads that are being allowed to be posted -
I agree with your other thoughts though.
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Postby Billmeik » Sat Jan 02, 2010 10:30 pm

when I first looked at ms discussion on the web it was '02 or so.. The only place to talk was the Harvard brain talk forum and it was very conservative. The idea that patients should take power into their own hands and make things happen curing this disease was radical. Then thisIsMS started a year or two later, and the notion of info by the patients for the patients took root. I spent 04 to 09 researching the idea 'I wonder if I can just deny I even have MS' and it worked ok, but now I've relapsed so I'm back into it. This a WAY healthier community, intelligent, inquisitive.

The fact that there are some flaky elements around should be offset by the fact that every day there is more and better science on the subject too.
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Postby Brainteaser » Sat Jan 02, 2010 11:18 pm

Jay,

You're side-stepping the issue and that's the problem. Both threads you started fall under the same umbrella of 'Posting Issues' or something similar. But at least you have raised the matter.

Whilst it is easy for people to start new disassociated threads or get the 'notoriety' of doing so, I believe we'll have a problem, but I accept I'm in minority........but what's new?

Phil
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Postby Johnson » Sat Jan 02, 2010 11:50 pm

I trust that the irony of a new thread, about so many new threads, is not lost.
My name is not really Johnson. MSed up since 1993
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Heavy Handed Moderating

Postby AndrewKFletcher » Sun Jan 03, 2010 2:59 am

Just adding my own experience of forums over the years.

The one thing that really ruins a forum is heavy-handed moderating. This happens when a Mod applies his/her own bias to everyone else’s posts. This brings about the demise and people that can't stomach bullies move on. The forum then becomes very quiet with the same few people babbling rhetoric with each other.

Let's hope this magnificent forum can avoid going down this route.

Better to move posts to appropriate slots that appear out of place than to lock threads.

But then there are those hell-bent on disrupting forums for whatever reason or hidden agendas. These people will post distractions that are way off topic, but fortunately easy to recognise.

Then there are the sales people moving into new territory, again usually pretty blatant and easy to moderate.

Attacking drug companies for their failure to deliver anything of value despite countless $billions in sales is bound to upset a few apple carts, but People with ms should be well pissed off that their bodies have been assaulted by a bombardment of pills and drugs and even chemotherapy to suppress their already battered immune system, when circulation is the cause and key to a cure! Did I say the dreaded C word? Yes a CURE!
Will it be the stent or angioplasty procedure that liberates everyone? Time will tell, though I do not doubt it will be of use in some cases.
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Postby Brainteaser » Sun Jan 03, 2010 3:54 am

Didn't escape anyone, I think Johno - but we're all involved in this unbridled proliferation of threads. Good on Jay for raising it.

Andrew - can't speak for others, but no-one seems to want censorship; just a bit of order.

Phil
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