This Is MS Multiple Sclerosis Community: Knowledge & Support

At the core of the present dispute between Bob and Cheer, seems to be the issue of whether the public health system should fund CCSVI assessment and/or treatment. As someone who actually has the condition CCSVI, I'll put my hand up and say that it would be very welcomed if funding were to occur but I don't expect it. After all, I've been around far too long to expect miracles in terms of the public health system. However, it would at least be comforting to know that these procedures are readily available locally, without too much hassle if the patient is prepared to pay privately and indemnify in terms of risks.

Second point - Aimspro and bee sting therapy are not in the same league as liberation in terms of the level of serious medical support and interest. There is no link whatsoever. BTW Bob, I've tried both those treatments also (at my own expense) and from a consumer's perspective, liberation comes out well in front in terms of its potential benefits.

Bob - your posts are always entertaining. I certainly don't take you too seriously. You probably started out as the well-meaning devil's advocate but have now entrenched yourself into a fairly negative mind-set without fully realising it. I cannot believe that a humble university employee as yourself, with a wife who has had MS for 4 years, would be arguing against the public health system paying for an emerging treatment with implications for MS. BTW, how is your wife as I haven't seen any reference to her lately? Has she gone and got herself liberated?

Phil

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First of all, apologies to Patient X - I lumped you in with the likes of Lyon after seeing his message re laughing hysterically. Really, I was reacting to Lyon's grotesque posting where he refers to Dr. Brandes as charlatan and continues on a degrading tirade about this experienced physician's blog.

In truth, Lyon, I do not know what exactly you want - more trials? more clinical proof? a pulpit? The fact is I couldn't even read your entire message because words like "READ MY LIPS, DR. BRANDES" "charlatan", etc., etc., blinded me to the rest of your text and got my back up.

My issue with you is that you were puffing yourself up on this site by attacking the good doctor instead of respectfully addressing him with your questions about his assertions - which you still haven't done. So I stand by my "it's the braggart thing", boasting about the big fight you won when there really was no fight.

Now I read that a post that says your wife has had MS for 4 years. I wish your wife good health and hope the years ahead with this disease are kind to her. The truth is, many of us have been "living" with this disease for many, many more years than that, with each year taking more and more from us. Enough is enough. We want whatever relief CCSVI can provide, and we want it now...any relief will be a blessing.

Good health to all.

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lyon, FU[/b]

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EVERYONE SHOULD get tested for CCSVI ASAP.
A doppler, an MRV, even a plebography if this is what it takes for you to get the picture. Find a doctor wiling to do it and do it. It is safe.
Find out if your veins are working as they should. There is NOTHING FOR YOU TO LOOSE BY TESTING.

DO NOT TRUST ANYONE WHO SAYS THE OPPOSITE.

People, DO NOT WAIT. There is no time and there is always a chance for the upcoming CCSVI trials to be incoclusive for various reasons.

Multiple sclerosis is different for each one of us. Maybe yours is caused by CCSVI.
Find out NOW if you have CCSVI.

DO NOT WAIT. Stay on your drugs but check your veins.

Regarding the immune system reboot someone in here is so in fond of, i can tell you from MY OWN experience that it s pure bullshit when it comes down to some types of MS. Which? Mine for one. I have had a huge regime of campath that noone on earth has ever had for MS only to come down to the conclusion that it does nothing for MS progression. Is it only me? NO.
Try CCSVI before taking chemotherapy. It is VERY DANGEROUS and ineffective while CCSVI diagnosis is as safe as diagnosing a cold.

No drug will open up your veins if this is the route of your problems.

CLINICAL TRIALS FOR CCSVI WILL TAKE LONG TO GIVE CLEAR RESULTS. GOVERNMENTS WONT PAY FOR THIS AND IT IS ONLY LOGICAL UNTIL THEY KNOW BETTER. IT IS NOT THEIR FAULT. HELP THEM TO UNDERSTAND.
DO NOT WAIT TO GET TESTED. FIND OUT AND LET THE REST OF US KNOW.

At least let ME know, if others dont care via a private message

Bob--
none of this is about you. It's not about me.

It's about the known disease of venous insufficiency. CVI is treated anywhere it is found in the body. This is why insurance paid for Jeff's testing and treatment. When a vein is closed down more than 50%, it is considered harmful to the organ it drains. Liver, kidneys, brain, legs. That's called venous stenosis. It's real.

I wish you and your wife well. You are so fortunate her MS is not crippling her. So fortunate. I'm so fortunate I have Jeff back. Two years ago, he did not want to be here. He was gasping for air at night, falling asleep driving, unable to work for more than an hour at a time. Slipping away. And now he is here and present. Sleeping without apnea, dreaming again. Awake and working full days, going out at night. Living. Because his brain has oxygen. Others deserve to know if venous insufficiency is harming themselves, or their loved ones.

It's a simple (or complex) as that.
Off to church and a new day.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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Lymp, do not get upset with Lyon friend. He is our lucky charm in here. You ll see if you stick around long enough. He is giving colour to our debates nonetheless and he is saying correct things from time to time.
But it ll take a trained eye to come to this conclusion.

When someone says more trials are needed, I would really like to know what is the plan to do that? Who does it? Who funds it? What is the timeline?
I don't think most of us would be so nervous if there were answers to these.

Normally, we would find watchdog agencies and patient community fighting drug companies for promoting dubious drugs.

CCSVI finds itself in a unique situation where patient community is fighting for allowing testing and procedure, while certain section of Dr's and drug companies (through proxy front ends in the form of MS societies) are opposing. Pretty interesting ...

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And why can't they get a referral? As has been written many times in this thread, venous insufficiency is a recognized condition. The reason probably lies in the fact that any doctor is reluctant to treat a condition that does not show clinical problems. If venous insufficiency does not cause MS, then what are you left with? Why should a doctor feel the need to address it? That is why I don't think it makes sense "to take MS out of the equation." And if it's important to take MS out of the equation, why are the only people to be treated so far those with MS? Maybe this is a good end-around strategy to push this treatment into the mainstream. But then let's be honest about it.

I don't know much about the countries that you cited, but I would guess they can't get referrals because they have publicly run health systems that require referrals. Assuming this is the case, then venous insufficiency of the jugulars must not be such a recognized condition. Maybe residents of countries with public health plans feel this treatment should be offered, based mainly on internet accounts. But I suspect those countries will have a more rigorous system for deciding what treatments to offer, and not just rely on internet boards and blogs - crazy as they may seem.

But even here in the U.S., if you have a health plan that does not require referrals, you will probably still have a hard time finding a vascular doctor who will perform the "liberation" treatment. Why? Because it goes back to a lack of clinical manifestation. If CCSVI is shown to be involved in the pathogenesis of MS, then that will be a different story. Statements like

paint a picture that there's a clear dividing line between vascular doctors who think CCSVI is a real pathologic condition, and backward doctors (especially neurologists) who don't. This just isn't true. Many IR's don't think narrowed jugulars are a problem.

I never wanted to do this, but...

In hopes that no one gets hurt again...

Bob, remember what happened back in early February of this year? I'm certain no one, especially you, wants a repeat of that kind of episode.

I'm going to make you a deal: If you stop posting until your flare is under control, I'll keep your secret safe -- the secret I discovered when you let your mind become so consumed with rage that you stopped being able to think properly and so let down your guard.

I hope everyone has a nice day.
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Boy, this thread really grew quickly, and many of the posts are just too long for me to read right now. But I saw my name mentioned a few times, so I should address some of those comments.

First, I didn't post any "pumped-up tripe" here nor do I think I ever have. I was simply commenting on the statements that CCSVI testing is being denied to people, and the claims that CCSVI should be considered separate from MS. I don't agree with this; if CCSVI is involved in the pathogenesis of MS< then let's continue to gather evidence of this. I think it's going to be tough to convince doctors to offer CCSVI testing/treatment otherwise.

Second, I don't feel a need to distance myself from anyone. I post what I think; Bob (Lyon) posts what he thinks. Sometimes those ideas coincide, and I think that's more noticeable in this forum because of the hysteria that has grown around CCSVI.