This Is MS Multiple Sclerosis Community: Knowledge & Support

I just received my weekly email from the fundraiser gang but it doesnt make sense & to be honest Im fed up with the games....

I do NOT send people to Dr. Mehta in the US. He does one vein at a time and double charging patients. He has also been found guilty of medical malpractice for not making good decisions for the patient. He also just blew the whistle to insurance companies telling them that this procedure is for the treatment of multiple sclerosis, when it is a treatment for venous disease in people with MS. So here in the US we have a new battle coming down the pipes because of the pompous behavior of one doctor. Who ever keeps the list may want to remove that dr from the list.

http://www.timesunion.com/local/article ... 807153.php

Does anyone know who CAPITAL REGION MEDICAL RESEARCH FOUNDATION INC are? or if they currently have anything to do with CCSVI?

I'm just relaying information and wondering why a liberated CCSVI youtube specialist, would be dishing the dirt on their own kind?

I couldn't give a flying f**k about the fundraiser BS. Not my kind of people.

Regarding your "liberated youtube specialist" comment: I think I know who you are referring to, and if I'm right, and I admit that I might not be, this person has bashed Dr. Mehta before, shills for Dr. Siskin, and spends a lot of time on cheer's Fb page.

Regarding your Capital Region Medical Research Foundation comment: It is a group of fundraising urologists who have the SAME ADDRESS as Dr. Siskin -- interesting, isn't it? That they and Dr. Siskin have the same address of 711 Troy-Schenectady Road, Latham, NY. They're both on the first floor mere doors apart. Coincidence? I have to wonder... I don't know why you're asking, but I do find it interesting. So, why do you ask?

I've noticed that some liberatis become too attached to the cause of CCSVI and can't see the forest for the trees, bite their own nose to spite their face, and end up actually hurting the cause because they become too attached to one doctor.

I have tried my best to wend my way through the minefield of CCSVI to support all doctors that I can with my limited energies: Dr. Sclafani, Dr. Mehta, Dr. Flanagan, and Dr. Dake to name a few. I have also donated money to CCSVI Alliance who I like to believe represents all doctors equally.

I can't stand the games, either, and I still see them being played, but you and I may be talking about different kinds of games.

Your turn.

PM sent.

For the record, I rate shills as spineless twats and sadly we already have pro CCSVI shills. I find it totally unacceptable, and highlights how disreputable this industry is.

Could the moderator please close my account here, otherwise I'm going to start posting private info & explain why I consider the whole scene corrupt & beyond help.

PM sent

Private info shouldn't be disclosed without permission, but I'm sure there are lots of people who are interested in the other things you want to say. You do have a right to your opinion.

I really don't think the moderators close accounts, at least I hope not, unless someone is banned, that is (but only one person has ever been banned by the moderators - petakitty).

I hope you stay.

I am/was one of Dr. Siskins very first ccsvi patients and found him to be extremely professional and caring. He did have some misgivings about other doctors getting involved in the treatment of ccsvi patients who didn't have much experience in the angio and stenting areas.

Let's be extremely carefull in calling out doctors as their are a few who are pioneers/heroes in the field (Dake, Siskin and Dr. Sal in particular) who have stuck their necks out for us.

I have noticed negative posts in the last few weeks about Dr. Dake, now this one with Dr. Siskins name.

Has someone figured out this might be the way to stop this promising research?

the drug companies have people everywhere on the internet .

Hi Jay,

Excellent post. Excellent reminder.

So everyone knows: I'm not calling out any doctors, not at all. I was, though, interested in what a group of urologists have to do with CCSVI, if anything. I happen to live in Albany and know very well, thanks to eleven years of having MS, the medical building where 711 Troy-Schenectady Rd., Latham, is located, so I was surprised when a search brought up the same address as Dr. Siskin.

Also, to be more clear, I try to remain neutral these days which is why I did not defend any doctors; otherwise, I would have tried to defend Dr. Mehta who performed my liberation and who this thread title is about.

As I said in my first post, it's hard to navigate these rough CCSVI waters.

Thanks, Jay.

I am sad for the woman who had this happen to her. It reads as if it was a mistake; I haven't the background to know if this was an easy mistake to make or a hard one. Of course it never should have been made.

I consider Dr. Mehta one of our pioneer CCSVI doctors. Dr. Dake began treating in the spring of 2009: first in the US. Dr. Sclafani began treating in December of 2009: first on the East Coast. Dr. Mehta treated Michael, Kasey's husband, in January of 2010. Was he the second on the East Coast? Or did anyone else slip in there? In February he became mired in the IRB process. He picked this up and was going with it at a time when many of our johnny-come-lately doctors hadn't heard of it. He is also valuable as a CCSVI vascular surgeon, when most are IRs. In the recent joint interview with Dr. Dake, he discussed the possibility of jugular grafts. He may well be the first to carry that forward, which will benefit people who are currently untreatable.

thought we were all ADULT'S here fighting for the same cause????? finger pointing at the VERY DOCTOR'S that are fighting for our cause???? BIG HUGE DIFFERENCE from the article about timing and the poor womans leg and MS here folk's!!!

_________________
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Uh, time to lock this thread too? Jeesh!

The case was settled recently. It's not pointing fingers, It was an attack on Dr Mehta. I have my doubts we're all fighting the same cause because it came from a CAPITAL REGION MEDICAL RESEARCH FOUNDATION INC fundraiser who apparently collects for Dr. Siskin.

I dont think we are all fighting the same cause. Internal squabbles are happening, the skeptics cant get a word in edgeways.



Why lock the thread?

Im sure they wanted to cause damage but dont think they want it known where it came from. I spared the individuals name but it makes no difference to me either way.

I'm curious why a liberated & very active fundraiser for one side would rat out the other. Im wondering if there is a good explaination as everyone seems to be singing the doctors praises.

All very relevant so there no need to catagorise me as a CCSVI skeptic. Sure Im skeptical about the business end but US isn't even my continent.

I'm so glad to know that I'm not the only one who thinks the accident to the woman in the court case has nothing to do with the treatment of CCSVI.

One was in an emergency situation, with a transfer, after an accident.

CCSVI is treated in Dr. Mehta's clinic under the strictest of protocols.

I had my liberation treatment by Dr. Mehta about a month ago, and I truly appreciate the fact that he does only one vein at a time.

In this type of surgery there is always going to be a chance of clotting or bleeding. It is my understanding as his patient, that Dr. Mehta prefers to do only one vein at a time because if there were to be a problem, he would know exactly which side to go to in order to fix it.

No time would be lost in trying to determine from where the clotting/bleeding was originating.

I too feel that there are those who have it out for Dr. Mehta, and I'm not quite sure why.

He is a visionary who is going to great lengths to help those of us in the MS community, and I am deeply grateful to him.

I could sit all day and listen to him share his hopes and dreams, his pioneering thoughts on other options that may soon be available to those of us with MS/CCSVI.

He is a complete professional, as are those who work on the team with him. I've never seen such a great staff of people...from the front desk, to billing, to his nurses and techs.

I also appreciate why he has chosen at this time not to do stents.

If you are considering undergoing this treatment, I would highly recommend that you contact Dr. Mehta.

whatilearnedfromthewordtoday.blogspot.com

Rhonda, I've been finding fake accounts on both sides, hidden agendas left, right and centre.

I was naive enough to come into CCSVI expecting doctors/charity/awareness groups to be interested in helping the overall cause, to help people on a road to recovery. Some do but many others can't see beyond themselves.

What I've witnessed is disguisting. I have no bone to pick with Dr Metha but others appear to, and apparently it's coming from the same side of the fence.

I have nothing left but disrespect for certain parties. There's some serious exploitation going on from both sides but it's like talking to a brick wall.

Some of the CCSVI campaigns are bordering on fraudulent, some of the skeptical rants are just as distasteful.

Im left wondering if there are many people involved who want answers unless they can extract every last penny from it.

Awereness campaigners are cutting each others throat just to get their own little teams involved. Many are totally ill equipt for the job although the resources are there. No unity = general failure.

A little openness would go a long way but it cuts into profits for many.

Sure big pharma have sales targets to meet but so do fundraisers, docs and the whole shebang. It's getting us nowhere fast.

I dont know the background between Dr. Mehta & Dr. Siskin's teams but there is a problem and some people around here will know about it. It's EV- for the patient if not resolved between them because somethings going on and it's not good.

Im on the fence with CCSVI because of all the monetary crap over the last year. Our gov't in the UK supports exploitation so I dont know if there is anywhere to turn to. Patient groups have shown themselves to be nothing more than sales teams. I'm not talking about innocent patients sucked in as cover, im talking about the rodents behind the scenes, the business minds, the gods of charity/medicine.

The Paradigm Shift is a myth. No changes coming from the current settings and patients as ever are being screwed for all their worth, good efforts being used against them. One step forward, two steps back if you ask me.

Current groups are in the process of causing irrepairable damage. Awareness costs nothing, lets keep it that way and let the docs do their own bidding, they have the money and the resources, let them earn their reputation on the back of results. They shouldn't fear lack of support because it'll come in droves if CCSVI does what it says on the label.

Exploitation is all around us and thats never positive. CCSVI is such an easy sale, it's laughable. Im sick to the back teeth of the slap a donations sticker up and move on to the next gullable mugs mentality.

Some better have a serious word with their own teams, an attitude change is well overdue or we are wasting our time with CCSVI and as well pissing into the wind.

Just an opinion but if you want me to point out specifics I'll end up ripping into some high profile CCSVI advocates, doctors, wanna be gangster fundraisers and non-profit groups.

A lot is broken within CCSVI and much comes down to attitude. It's getting worse and people are patting each other on the back for it. If we cant root out the rotton eggs we have already failed.

I hate this scene because all I want is a solution. I have a family member which reminds me how personal and upsetting it is. The over-emphasis on business is not to my liking, nor is the close minded skeptacism.

Ok, I think I'm understanding what's going on, and if I'm not I'd rather not know the dirty details.

There are three CCSVI trials in the US that I'm currently aware of. Two are underway in Albany (Dr. Mehta's and Dr. Siskin's) and one, Dr. Dake's, is not yet underway. I also read that Dr. Haskel is fund-raising, is this for a trial too?

Then we have registries: Dr. Hubbard's and Dr. Sclafani's.

I say we follow our better natures and support all of these doctors.

VeeBee, I have a personal stake in this too, I'll be treated (hopefully) in January and would like to continue as a patient advocate in whatever capacity even if my treatment goes well and I could move on as some have. I am firmly in Dr. Sclafani's camp, I'd give him the moon on a platter if I had it handy. And he has urged that it is not yet time for trials because they are still working out the best practices. A trial with less than best practices will not tell us as much and could give false nonresults which could be devestating. I am more concerned about that than any rival camp antics.