This Is MS Multiple Sclerosis Community: Knowledge & Support

Blood thinners were tested in MS in the 50s or so without results to be found.

I am also not sure if the antiplatelets that are often prescribed (aspirin, plavix) would have an effect on Hughes syndrome or if only the anticoagulants (arixtra, warfarin, lovenox) would?

Dr. S,
As I'm sure you are aware, some of the CCSVI studies presently underway are using US and MRV to assess vein patency. My daughter has the option to participate in one such study in Canada. My question is this: do you believe that such studies are of value in furthering the understanding of the relationship of CCSVI to MS? Or, given that your opinion of MRV is that it "does not have proven merit", do you believe that these studies may simply be a waste of time and money? Part of the reason I ask is that gadolinium is used for the MRV, and why would one choose to have an MRV for research purposes if it is of little value?
Thanks for your time, and for all of your contributions to this board.

prairiegirl,

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

There's some other factors concerning using MRV's. One of which is that we are talking about uber-strength T machines. I am aware of only of a couple of MRI machines capable of producing the magnetic field required for the Hubbard protocol here in Chicagoland. Also, we are talking about much, much more expensive testing for a MRV versus an ultrasound.

Also, an MRV is static and can't show flow dynamics.

The downside is that a doppler ultrasound does need a skilled technician and image interpretor. Training and experience is the key here.

Donnchadh

An MRV will also show how the dural sinuses look, which is useful information even if nothing can be done about it.

Dr. Sclafani, hope your week is going well! Seen anything interesting or unusual in our veins lately?

Dr. S,
I don’t think your question about “sticky blood syndrome” was answered. It is also known as Hughes Syndrome. The info below is from the Multiple Sclerosis Resource Center site. Also check out http://www.hughes-syndrome.org/overview.htm for more info.

The blood disease that mimics MS - Hughes Syndrome. Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called antiphospholipid syndrome or ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome"...Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.
What is Hughes Syndrome? Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked... Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill.
MS the wrong diagnosis? The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome...Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking.
Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS.
How Hughes Syndrome mimics MS Symptoms include problems with:
• Mobility - difficulty in walking, tripping and dragging foot
• Vision - double vision
• Tingling feelings
• Fatigue
• Balance
• Speech
• Memory

Hello, I had 30% stenosis in LIJV and 50% in RIJV...had procedure on the 20th of Dec. did quite well with result's...balance, steady gait, bladder much improved, MUCH LESS SPASITCITY...in the last week steady decline...question being: Is there better result's getting the procedure done again the second time? Or is it likely for the stenosis to happen again so quickly? Thank you for your time )

Dr. Sclafani,

I had a recent venogram (nfortunately, nothing was done except take images).

What do you think of this jugular vein? Could the valve at the bottom be causing an issue? (There is significant collateral activity at the top of the jugular.) It was ballooned in Aug 2010 but is still the same.

Thanks!

AlmostClever

Dr. Sclafani,
As my tentative & (several times) rescheduled appointment is looming closer... I am pondering follow-up doppler tests and the comment you made back on October 14th, as quoted above. Is there a place in Canada where you have arranged for follow-up or is that something you will brief me on once I am there for my treatment? Thank you for your help - just wondering if I need to make some arrangements ahead of time?
Deb

Dr. Sclafani,

I really trust your judgment.

Am I wrong in recalling that you had stated earlier that you've never seen these kinds of vein anomalies in your entire career and that, even going back to review venograms of past non-MS patients, you didn't find these types of problems?

I'm just trying to reconcile what I thought you had stated (or please clarify if I'm wrong) with the recent BMJ study, the other studies that showed no difference between MSer's and healthy controls' veins as well as Dr. Hubbard's remarks that he, his wife and daughter all showed vein abnormalities on MRV.

Thanks.

I have never endorsed the haacke protocol because it has not been proven. the haacke protocol has not passed any muster that i know of. it has not been compared to the gold standard of venography as has ultrasound for ccsvi.

interpretation of the haacke mrv is operator dependent as well.

but it aint over till the fat lady sings

You could even increase the number of cut planes and get some pretty accurate hemodynamic data.

The perfect crime? CCSVI not leaving a trace in MS

Christoph A Mayer,1 Waltraud Pfeilschifter,1 Matthias W Lorenz,1 Max Nedelmann,2
Ingo Bechmann,3 Helmuth Steinmetz,1 Ulf Ziemann1

ABSTRACT
Background Multiple sclerosis (MS) is a chronic,
inflammatory demyelinating disease of the central
nervous system, believed to be triggered by an
autoimmune reaction to myelin. Recently,
a fundamentally different pathomechanism termed
‘chronic cerebrospinal venous insufficiency’ (CCSVI) was
proposed, provoking significant attention in the media
and scientific community.

I think this depends on what part you are interpreting. The FQ part is pretty definitive - you know how much red & blue blood is passing through all vessels across any of several planes, for a cardiac cycle. You could even increase the number of cut planes and get some pretty accurate hemodynamic data.

What you do with the data is another thing, but I would think it's good to know quantitatively where the blood is coming from and going to (incompressible fluid plus conservation of mass, etc), and how a procedure affects that.

And having the data, you could study their relation, if any, to symptomatic changes.

I agree about interpretation of MR imaging of blood vessels. Those are indeed static pictures that don't tell you why a vessel is pinched, and you don't get to see the valves, etc etc.

You well know Dr Haacke's line of having an MRI "because your neurologist wants you to have one". In the absence of interest by neurologists, I would hope people get FQ MRIs (much less tube time and expense, and operator independent) "because your IR wants you to have one".


Amen.