This Is MS Multiple Sclerosis Community: Knowledge & Support

Lassy
Cece is one of the nicest people on this forum and one of the most knowledgeable on CCSVI. Your rudeness to her is uncalled-for.

ditto re cece - cheez louise let it go!!!!!!!!!!!!!!

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PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia

Please take a look at this thread:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18063.html
SynergyHealthConcepts relies on Prof Haacke's MRV protocol?? I have not heard/read that he can diagnose all CCSVI syndrome problems using it. Leading practice says that cathereter venography and intravascular ultrasound are required in combination. I collected this information for the UK's NICE consultation and circulated it to Prof Zamboni and others. That is why I start the GOLD STANDARD thread.
If Lassy or anyone at SHC wants to argue with anyone then argue with me. I do not hide behind a nom de plume and am very public in my comments on CCSVI syndrome.
MarkW

PS Cece only seeks to give good info to pwMS, many of whom struggle to finance the procedure.

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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

Just trying to make a point she is not hearing alot first hand its all 2nd, 3rd hand and that is not facts.
If Cece is knowledgable on CCSVI then she has more homework to do apparently.
This thread is same nonsense poor Dr Sal Scalfini is going through with ridiculous bashing from those who have never been treated by or met the Dr either.
This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.

Dr Haacke MRI information is here Mark

http://www.ms-mri.com/index.php?site=why

TIMS members .... let's not take the bait .....

Mr.Success

Telling people they are spreading gossip, hearsay and rubbish is inflammatory and will get you nothing here but ignored. I think the doctors who are legitimately working in CCSVI research and treatment do not have anything to prove to people in this forum, and have had to face down many critics with very real qualifications. People in these parts will understand over-sensitivity, as they have been the objects of a lot of negative attention. But please, criticizing Cece's posts will not make her go away. She has a life, and a large part of it has been dedicated in the last couple of years, to making sense of the whole CCSVI situation, helping those pwMS who are interested in the CCSVI procedure, science, medical research, etc. As a consumer she has been most vigilant on their behalf.

I am not trying to dissuade anyone from getting anybody's treatment, as I do not have enough knowledge or information, but I do believe that such vigilance is necessary. I think those in this forum generally don't want anyone to get a free ride on the backs of sick people. A lot of potential CCSVI patients read and heed what Ceci says. She has proved herself to them, and if you read this forum from its beginning, you would see that. She has had her procedure, and has no conflicting interests.

Nobody is unique in offering "the full Haacke protocol" (sounds like a wrestling hold :^) unless Dr. Hubbard's Foundation is the only one, or is not offering it anymore. I received email from them this morning:

* In the above, I changed my name.

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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

I was thinking about this thread and I think it would be good to reframe this not as hearsay but as feedback. If some of what patients are saying is misinformation, that does not mean Synergy meant for them to be misinformed, but it has still happened. The main misinformed belief has been that only Synergy treats the area of the valves. I have heard this from a number of posters, and those links could be provided if needed. This is feedback, nothing more. It is in everyone's interests to have patients be accurately informed.


Which doctor? They are not all in agreement...in fact, I think it is especially informative to know what the doctors disagree on.

btw thanks 1eye, MrSuccess, MarkW, esta, and David....it is my aim to help out and to keep things accurate...and I include TiMS among the good things in my life, although by no means the only good thing!

Lassy
As I said Cece is a very nice person, but I am not. So let me dissect some of your comments:

You said, "I hate Tims because no one says their real names ..."
So let me ask you, is Lassy your last name or your first? And if you hate TIMS why do you come here?
BTW using a screen name is a good idea. If you knew our names you could probably find out where we live. Why would we want you to know where we live? For all we know you could be the next Unabomber. You seem to have the demeanor for it.

You said; “Otherwise make your time more productive than being a shit disturber.”
Wow look who’s talking. I haven’t seen anyone stirring it up as much as you in all the time I’ve been here.

You said, ” This thread is same nonsense poor Dr Sal Scalfini is going through with ridiculous bashing from those who have never been treated by or met the Dr either.” If you took the time to look around before you started your own bashing you would have seen that Dr. Sclafani is a regular contributor here and has his own thread. He is well respected here, especially by Cece.

You said, “This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.” Ok so stop wasting your time and as for getting our info from doctors, would that be our neuros who don’t even believe in CCSVI?

You joined this forum only yesterday and immediately picked a fight with one of the most well-liked posters. Bad idea!

Does she mean that there is some other forum or social media site where this is going on?

I gotta say, this thread did not go where I expected it to go. I started the thread to share the graphic, which I saw as usefully simple. I've also liked Dr. McGuckin's (of VAC, not Synergy) graphic that he uses post-procedure to show patients what he's treated. It is a simple drawing of a body, where he can mark the areas that were treated.

I (MarkW) wrote:
SynergyHealthConcepts relies on Prof Haacke's MRV protocol?? I have not heard/read that he can diagnose all CCSVI syndrome problems using it. Leading practice says that catheter venography and intravascular ultrasound are required in combination. I collected this information for the UK's NICE consultation and circulated it to Prof Zamboni and others. That is why I started the GOLD STANDARD thread.

Lassy replied:
This is why groups such as this one are a waste of time. pwMS get the facts right from a Dr not anyone else.
Dr Haacke MRI information is here Mark
http://www.ms-mri.com/index.php?site=why

MarkW comments:
Haacke protocol does not promise to detect all instances of CCSVI syndrome. If anyone at SHC with a name wants to argue with me then lets hear you. PwMS can read that the GOLD STANDARD diagnosis for CCSVI syndrome utilises catheter venography and intravascular ultrasound in combination with an experienced interventionalist. MRI (Haacke protocol) is a useful tool but may miss instances of CCSVI syndrome.

Wasting my time ?? Simply analysing data rather than opinions.

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