This Is MS Multiple Sclerosis Community: Knowledge & Support

The Multiple Sclerosis Journal has covered CCSVI in an editorial from Omar Khan (Wayne State), a letter from me, and a reply from Yamout et al.

I made this statement:
Many pwMS are not concerned at the exact correlation coefficient value, and they are indifferent if their vein restrictions are a cause or a later product of MS as Yamout et al. propose.1 The simple question asked by pwMS, ‘Is there are a correlation between MS and EVS?’ and the results from Yamout et al. give an unequivocal ‘yes’.

The reply says;
Walker states that MS patients are indifferent if their venous restrictions are a cause or a later product of MS. We disagree with this statement since the absence of EVS at the earliest stages of MS makes it an unlikely cause of the disease.

I hope that many people with Multiple Sclerosis will give their answer to the TiMS poll and tell other pwMS about the poll, so it receives many answers.

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

CCSVI is present in 50% of pediatric MS patients making it unlikely to be a result of the disease MS.

Letter written in late October 2010, shortened at Editors' request to:

Report of extracranial venous stenoses in relapsing–remitting multiple sclerosis patients
Mark A Walker - Chair, Multiple Sclerosis Therapy Centre, Oxford, UK

Yamout et al.’s paper1 is welcomed by many people with multiple sclerosis (pwMS), as it reports that people with relapsing–remitting MS (RRMS) for more than 10 years are highly likely (12 of 13 subjects or 92%) to have extracranial venous stenoses (EVSs).

This study made an error in combining results from RRMS and clinically isolated syndrome (CIS) subjects, naming them early MS (EMS). Such a grouping does not follow the McDonald criteria, as CIS is not MS in this classification. Excluding results for CIS from the data means results for a group of RRMS is obtained. This revised data shows that 18 RRMS subjects have stenosed veins within the subset of 31 subjects with RRMS. The resulting correlation factor of 0.58 is similar to the initial results from the Buffalo Neuroimaging Analysis Center (BNAC) Buffalo, NY, USA, which reported a correlation factor of 0.55.2 Research deriving from a theory by Professor Paolo Zamboni, University of Ferrara, Italy3,4 has been investigated by vascular specialists, in countries as diverse as Jordan5 and Poland6 with results of 0.84,5 0.9,6 and 0.9.3

Many pwMS are not concerned at the exact correlation coefficient value, and they are indifferent if their vein restrictions are a cause or a later product of MS as Yamout et al. propose.1 The simple question asked by pwMS, ‘Is there are a correlation between MS and EVS?’ and the results from Yamout et al.1 give an unequivocal ‘yes’.

Research neurologist Dr David Hubbard comments that globally, over 2000 pwMS have already received testing and therapy for CCSVI.7 It appears that a significant number of pwMS are acting on early findings, rather than waiting for further research.

Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest statement
None declared.


↵ Yamout B, Herlopian A, Issa Z, Habib RH, Fawaz A, Salame J, et al. Extracranial venous stenosis is an unlikely cause of multiple sclerosis. Mult Scler 16(10): 1156–1172.
↵ Zivadinov R, Marr K, Ramanathan M, Zamboni P, Benedict RRHB, Cutter G, et al. for the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD Study). Description of the design and interim results of an epidemiological study of the prevalence of chronic cerebrospinal venous insufficiency in MS and related diseases. Neurology 2010; 74: A545–A545.CrossRef
↵ Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Tacconi G, Dall'Ara S, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. J Neurol Neurosurg Psychiatry 2009; 80: 392–399.Abstract/FREE Full Text
↵ Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Gianesini S, Bartolomei I, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. J Vasc Surg 2009; 50: 1348–1358.CrossRefMedlineOrder article via InfotrieveWeb of Science↵ Al-Omari MH, Rousan LA. Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis. Int Angiol 2010; 29: 115–120.MedlineOrder article via InfotrieveWeb of Science
↵ Simka M, Kostecki J, Zaniewski M, Majewski E, Hartel M. Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. Int Angiol 2010; 29: 109–114.MedlineOrder article via InfotrieveWeb of Science
↵ Dr Hubbard connects MS to CCSVI theory. http://www.komonews.com/home/video/106175483.html (accessed 29 October 2010).

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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

Cece wrote;
CCSVI is present in 50% of pediatric MS patients making it unlikely to be a result of the disease MS.

There is insufficient data to show that 50% CCSVI is a true result in pediatric MS. You have fallen into the trap, Cece, of needing to explain CCSVI in MS before treating the stenoses. I hoped that Khan, Yamout et a would do this (which they did). The trap was not set for CCSVI advocates !!!

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

I would want to open up any vein of my body, as soon as it is proven blocked. Doesn't this make sense?

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I agree with sou. Especially since angioplasty is a well established procedure and since compromised blood flow is part of other diseases (budd chiari, sinus thrombosis, etc) and because the organ that has restricted blood flow is the brain.

Now to get this trap off my ankle....

the argument from our esteemed provincial health ministress in ontarioland, is that it is not covered by ohip, not because vein narrowing is not a problem, but because ccsvi doesn't exist. or doesn't cause ms, or ballooning doesn't work, or doesn't make the blood flow, or doesn't cure ms. or something. anyway, it's not covered, so don't ask. got that? now leave me alone, can't you see i'm busy?

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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 agree that many pwms are interested in CCSVI not only if it is found to be a cause of MS, but also if it is only found to be only strongly correlated with MS. Of course my thoughts are that what we want is a therapy that helps now whether CCSVI is a cause of MS or not. I was quite bemused at the kerfluffle on Dr Zivadinov's recent paper where he concludes that CCSVI is NOT a cause, but IS correlated. As a matter of fact we do not know really. CCSVI is a hypothesis just like the auto-immune model is a hypothesis. Could it be that the cause of MS may be more that one thing ? I have had the CCSVI procedure, with stents, and believe it helped me even though one of my stents is occluded.

ozarkcanoer

Considering where you are posting this poll and how you have framed it, you may as well given one option to choose from.

My personal opinion, since nobody asked for that, is that CCSVI is a factor in a lot of seemingly unrelated unsolved problems in the medical field. A cure-all? No, more like a wreck-all. It is a real active circulation problem with grave consequences, in search of a better solution.

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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

^ What eye1 says....

That's kind of where it is in my mind also. I think it is a component that exacerbates a condition rather than being the absolute cause.

Ergo - if clearing the condition relieves symptoms then treatement is a no brainer.

It is not a cure though.

Like I told our neurologist, I don't know if CCSVI is related or not, but as EJC says, "if clearing the condition relieves symptoms then treatment is a no brainer."

If shaving my head bald would relieve MS symptoms I would do that too. How it's related to the disease is important but not as important as the opportunity to relieve these debilitating symptom.

This is what makes me so angry with the MS Society. They are spending millions of dollars that was raised by pwMS on imaging studies and nothing on treatment studies.

Bruce.

Only 26 people have expressed an opinion, yet over 400 have read the thread, I am hoping for more replies.............please.

Thanks for your comments. I am trying to focus the discussion with MS experts on 'let's treat the symptoms of CCSVI syndrome'. Polls like mine measure the respondents evaluation of risk rather than deciding on the facts. Usually pwMS are more willing to use a risky treatment (eg Tysabri) than their physician.

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

Sou that is a very general statement/. is a vein blocked when it is 20% closed? 40% closed? 80% closed? When does it actually cause symptoms?? Aren't there veins in our body that can become 100% closed and we really suffer no ill effects from it???

I am still impressed by the idea that it is the accumulation of blockages. A blockage of whatever percentage in one jugular, another blockage in the other, a blockage in the azygous....

The belief that the body could work around a blockage (such as when surgeons ligate a jugular seemingly without sequellae) is perhaps correct in normal situations but not correct when there are blockages in more than one of the veins.