Chronic Cerebrospinal Venous Insufficiency

[MEKoan]

This condition, caused by a narrowing of veins taking blood from the brain and/or spine to the heart, creating "slowed perfusion", was found in a recent study to be astonishingly common in MS

Treating the narrowing with angioplasty or a stent has caused test patients to experience dramatic and long remissions.

Since there is a lot of symptom overlap and diagnostic imprecision with ME and MS I thought I would post this here.

http://csvi-ms.net/en

It has always interested me that so many of us are diaguessed with MS at a time when "fatigue" has been an increasingly well documented and understood symptom of MS. For a time, ME was jokingly called MSlite.

Also, the cholesterol XMRV connection might predispose people with a cholesterol problem and a congenitally narrow vein...

so much to contemplate.

I think this also shows that those who do not test positive for XMRV have other options re testing and new findings being released as we use new imaging technology. CCVI is tested for with ultrasound.

Very interesting!

 

[MEKoan]

MS patients discuss this research and the ME/MS overlap.

It's interesting to see them discussing this finding which has, for them, the same significance as XMRV has for us.

I think those who do not text pos. for XMRV keep this in mind.

 

[leelaplay]

MS patients discuss this research and the ME/MS overlap.

It's interesting to see them discussing this finding which has, for them, the same significance as XMRV has for us.

I think those who do not text pos. for XMRV keep this in mind.

This sounds interesting to my non-science (especially now) brain. Would love to have some of the science people look at it.

There's the Japanese small heart study. Cheney and others (I don't know - think that's what I remember people who can read telling me) who talk of heart problems. Think also that there's a thread saying that high cholesterol came with ME/CFS for many although don't think I've seen any reports on it.

 

[mezombie]

Chiari Malformation & Cervical Stenosis

This is very intereresting, Koan!

Two somewhat similar alternative diagnoses for "CFS" were quite popular some years ago. They are Chiari Malformation and Cervical Stenosis. Both involve a narrowing of the the spinal cord canal at the neck which interferes with nerve signals. The symptoms are very similar to "CFS".

Along with many others (I'm sure), I had myself tested for these alternatives via MRI. I don't have either, but there are people who have tested positive and have had relief of virtually all of their symptoms through surgery.

Here's a brief article on the subject: http://www.co-cure.org/chiari.htm

 

[Mark]

I had an MRI scan on my neck a few years ago, because I had neck pain after whiplash during my onset and suspected a connection to my other symptoms. The scan found nothing though

XMRV itself could be as significant a finding for MS as it is for us, and an understanding of MS seems to me very significant for CFS. Shout if you're getting tired of me saying it, but MS is dramatically geographical, occuring overwhelmingly at specific latitudes. The wikipedia entry mentions loads of theories for this, but all of them are about the patient getting the right amount of sunlight etc and none of them relate to what other organisms might be living at those latitudes. To me it jumped straight off the epidemiological map that this is a fungus connection.

What put me onto this was, I'm incredibly sensitive to fungus, and I feel it whenever I sit on a chair (I carry things around with me to insulate myself from anything in a public space that I sit on or touch), so I know there's some nasty stuff living in the flat of my friend who has MS (coming out of his tatty old heater).

Just did a google for "multiple sclerosis fungus" and got 500,000 hits, so it seems I'm not the only one with this theory! Had a quick look at a couple of the results, both of them annoyed that mainstream science wasn't taking their fungal theory seriously...

The reason this could be significant for all of us is the rise in MS since the 1980s (gender-biased, unlike MS before that time when it was 50/50), combined with the suggestion from WPI of a link between XMRV and atypical MS. If MS is fungus-related, CFS could be as well, and I think it may be possible for XMRV to infect fungus and spread that way (I'd like confirmation on that though).

 

[MEKoan]

Merde... I forgot to post the link of the conversation the MS board.

I'm sure there are more interesting conversations but this is the one I encountered: http://www.thisisms.com/ftopic-6488-465-days0-orderasc-.html

MS used to have a much more stringent diagnostic criteria than it has since MRI technology was introduced. There was no atypical MS before that. And, as we all know, in the early days it was Malingerers Disease.

What we forget is that no-one knows what causes MS and no-one knows the mechanism of disease. All that is known is that there is a loss of myelin which usually (historically) reveals itself in a sometimes predictable way usually, but not always, affecting the eyes and trigeminal nerves early in the course of illness.

The Obands (?) in the cerebrospinal fluid are not always checked for since the advent of MRI and the discovery of predictable patterns of hyperintensities in the periventricular areas of white matter. EVPs are sometimes fine in people with atypical MS and Obands are absent.

MS is (I nearly wrote: poplular ) very common in Western Canada and less common in Quebec. So, Mark, geography definitely plays a part but it is also, as you observe, now 3x as common in women than in men.

I remain convinced that many with ME actually fall more clearly into the MS basket and it is a basket. People with MS forums talk about having their diagnosis "yanked" - they are diaguessed with MS and then undiaguessed. And, I see virtually no difference between atypical MS and ME. My neurological diagnosis has varied between "possible MS" and "probable MS" depending on who you ask. Were I to lose the use of something, I would drop into atypical MS.

Another interesting piece of this puzzle is that one hears more and more about people coming down with MS after a flu-like illness. And, couples, where one or both were previously healthy, both getting MS.

Again, Mark, this supports an environmental possibility... or a virus. But really cannot be completely explained by lack of sun at northern latitudes. There is more sun on the praries than in BC but the rates of MS are lower in BC than Manitoba where it is very high.

This CCVSI (is that right?) issue is very interesting because of the large number of people with ME who also have neck issues. I have a retrolithesis and some stenosis. I have had whiplash from a car accident. I had terrible neck pain for months on end in the first few years of illness.

But, while these things might predispose me to having a wonky vein in that area due to trauma or misalignment it is not necessary to have any findings on MRI re one's neck in order to have the vein problem which is seen on echo, not MRI.

How is MS really different from ME? Most people with ME don't have an LP; if they did, ow many would have Obands? If they had obands, would they disappear from the ME community because they would be identified as MS? Given that Neurologist "believe in" MS and not ME, would we ever know?

I think this overlap is of consequence and I think it is of consequence to both communities. I know we talk a lot about how people with Mild MS fare better and we feel people with MS are treated better (that isn't always so) and that they have treatment but the treatment doesn't always work, can be very toxic and some people's illness has a swift and catastrophic course.

So, maybe they have XMRV, maybe we have CCVSI, maybe we and they have both.



ETA Re the LP results. When I was spending time on MS forums, many there did not have a positive LP, or a constantly pos. result, although they have considerable disability. One patient, a very senior member who had severe disability, opined that if the LP was done when your disease was not active, your result would be negative. Many on the forum agreed with him.

And, yes, Mark, the MS community is very interested in several issues like fungus since they are in a very similar position to us and continue to struggle to find better answers and options in regards to diagnosis and treatment. What you wrote about the increase in MS which parallels the rise in cases of ME is pertinent, I think.

 

[leelaplay]

MS advocacy something to emulate!

The MS advocacy groups are doing good work. Front page+ article and a W5 documentary on the same day! Well done.

The Globe and Mail, one of Canadas two national papers, had a front page article on MS, more than the front page and continued on all of page 8 this Saturday.

The link doesnt show Saturdays pictures or titles. It had the longest headline Ive ever seen:

WEEKEND SPECIAL >> A CURE IN SIGHT

Canada has the highest incidence of multiple sclerosis in the world.
Half the population knows someone with the disease. And it affects more than three women for every man. Now on doctor in Italy has made an astounding discovery, one that suggests MS can be cured or even prevented. He did it out of love for his wife. And it has given people everywhere hope.

Dr Paolo Zambonis work shows MS to be a vascular condition, contrary to common belief.

Then page 8 has

I dont remember what its like to have MS. It gave me a second life.

the bottom corner has little boxes of facts, including
55,00 - 75,000 diagnosed, with 3 more each day;
symptoms,
common treatments,
theories as to cause


And, W5 showed a documentary on the new theory and Dr Zambonis work on Saturday and Sunday. I missed both and am not up to watching right now, but theyre making it available on the web.


islandfinn

 

[Mithriel]

I think that MS consists of different diseases and that there is an overlap with ME.

I became ill after a coxsackie B illness in 1968. I never associated fatigue with my illness until people began talking about CFS, but along with the sensory overload, problems with memory, temperature control and so on, I had transient paralysis, blindness and other neurological problems exactly the same as early MS.

I was told that blindness lasting more than 24 hours is MS, the longest I have had it is 20 hours.

XMRV may well be the unifying answer.

Forgot to say, (I have memory problems too!) there are very high rates of MS in Scotland which could account for some of the numbers in Canada. I go to an MS therapy centre and most people have cousins or even closer relatives with MS. Parent and child members are not uncommon.

Mithriel

 

[leelaplay]

Welcome to the forum Mithriel

So have you been diagnosed with MS, but are wondering about having ME/CFS as well? Or are you in some in-between world? It is intriguing as to whether they're related, co-infections.....
----------------------------------------------------------------

Today's Globe and Mail has a follow-up article to Saturday's.

I see so many parallels with xmrv, and find it inspiring to see what a good advocacy group can do.

While not changing their position of caution, the MS group, who funded 10 million in research last year (and that's in Canada - US equivalent would be about $100 million!) are calling for research proposals.

I see another advocacy opportunity. Think I will try to get this info together to send to the Canadian and American ME/CFS groups to say that they have the opportunity of doing something similar for xmrv. I'm not capable of much these days and it will probably take me a while. If anyone wants to help or to do it, PM me.

MS group to fund research into 'liberation procedure'

A new theory that multiple sclerosis is a vascular disease that could be treated with simple surgery is so exciting and potentially paradigm shifting that

the MS Society of Canada is calling on scientists to research it thoroughly and promising to back their work with significant research dollars.

This merits serious and robust studies so we're going to issue a request for proposals, Yves Savoie, president of the MS Society of Canada, said in an interview.

Last year, the charitable group invested $10-million on research, and Mr. Savoie said it will spend whatever is required to test the new theory thoroughly. ........

Further, Dr. Zamboni used a simple surgical technique, angioplasty, to clear blockages in the veins of 65 patients. This has been dubbed the liberation procedure.

In a paper being published Tuesday in the Journal of Vascular Surgery, Dr. Zamboni reports that in the 18 months following surgery, 50 per cent of those MS patients had no attacks; in a control group that did not have surgery, the rate was 27 per cent. The number of surgery patients with brain lesions that typify MS fell to 12 per cent, compared with 50 per cent in the control group.

Until Saturday, the MS Society had been skeptical about CCSVI, saying there is insufficient evidence to suggest this phenomenon is the cause of MS.

Mr. Savoie insisted the group's position has not changed, but, because of the overwhelming public response to the media stories, he wanted to stress the group's support for research that would either prove or disprove the theory.

We're conscious of the potential paradigm shift this represents and we believe every avenue merits being probed, he said. But our policy is to not put all our eggs in one basket.

The head of the MS Society also pleaded with patients to not do anything drastic until the theory is tested and proven. One of the things we really don't want people with MS to do is to abandon their course of treatment, Mr. Savoie said.

The W5 broadcast and the Globe story have generated an overwhelming response on MS chat groups.

Many patients are clamouring for information on how to join a study that is under way at the Buffalo Neuroimaging Analysis Center, which is recruiting in the United States and Canada, and how they can travel to Italy for surgery.

The position of the MS Society is that entering clinical trials or undergoing experimental procedures is a personal decision of patients that should be made in conjunction with their treating physician.

Ashton Embry, founder of the Direct-MS, a Calgary-based consumer group that emphasizes the importance of good nutrition for the control of MS symptoms, said in a Web posting that CCSVI has the potential to completely change how we see MS and how to treat it.

He predicted, however, that it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic, because drug companies stand to lose a lot if a surgical treatment becomes the norm.

An estimated 55,000 to 75,000 Canadians suffer from multiple sclerosis, a degenerative condition that can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis.

 

[bluebird]

I found an article on this same subject in my email last night. I find this all very interesting. MS was still known as the 'faker's disease' when I was young. I feel I, any of us with CFIDS/ME/XAND/unknown, could very well fall in the category of CCSVI. I have long felt that there is perhaps a primary vascular component in all this. As far as I am concerned I have no diagnosis. "She's tired" is not a diagnosis. When and if I feel better I will read all you've posted above. Great thread.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_QandA_091121/20091121?hub=WFive

 

[bluebird]

For what it is worth: I was reading last night about Zamboni's work, and somewhere I read that doctors in the U.S. do not find the constricted veins in their patients because they do not know Zamboni's ultrasound technique. I don't know who said this or what article references it. But it might be relevant if anyone is told after an ultrasound that they do not have constricted veins. We are told so much which pans out later to be incorrect that I felt this should be noted.

 

[Mithriel]

Hi Islandfinn,

I was diagnosed with ME in 1984 though I had been ill since 1968 after a Coxsackie B infection. I still tested positive for virus in 1984.

My neurological symptoms have gotten much worse and account for most of my disability so I think I either have MS as well, statistically a possibility, or, especially since ME is classed as a neurological disorder, there may be a group of patients who have a crossover illness and the diagnosis depends on the doctor.

I have spoken with other ME sufferers in the UK who have as much neurological problems as I have but it is not common. We may be one extreme of ME expression or the rest of the group may be diagnosed with MS.

XMRV may cause a lot of illnesses to be reclassified and shuffled.

Like you Sarah, I have found a lot of support from the MS community at a practical level. I have less in common with many CFS patients.

I have never been particularly fatigued (ME doesn't require fatigue) and never considered it in association with my illness until CFS was invented.

It would be good if this new operation helped some of those with MS. I have lost some good friends.

Mithriel

 

[parvofighter]

Hi Guys,
I've been also absolutely riveted by this MS finding. Here's a longer version of a reply I made to the Globe and Mail.

Several of you have alluded to a thought-provoking and important (potential) paradox: a) Why is MS more prevalent in colder climates? b) How do we reconcile this with Zambonis finding of structural changes in veins? Here is my kick at the can mostly a collection of (potentially connected) observations and hypotheses:
1) Higher latitudes have less sun;
2) Less sun = less vitamin D
3) Susceptibility to certain viruses is believed to be affected by low vitamin D levels
4) Some viruses cause inflammation of blood vessels, particularly the inner lining or endothelium, narrowing the opening (lumen) of the blood vessel through swelling, vasospasm, immune complex deposition, etc.
5) Changes to the endothelium (lining) of blood vessels can affect stickiness of the vessel potential for blockage/stricture?
6) Compromised blood flow might be like a snowball effect think of river deltas, where stuff is deposited at the edges, as flow reduces
7) Is the problem in the veins, or in the valves of the veins? Consider that other auto-immune problems with oft-suspected viral involvement also have known valve problems (eg. Rheumatoid arthritis and heart valves i.e. the mitral valve). Can auto-immune dysfunction in MS affect the valves in veins?
8) And FYI (for the MS crowd) hot new research (still to be replicated) from the esteemed journal Science - a retrovirus named XMRV was recently linked with chronic fatigue syndrome, malignant prostate cancer, and you guessed it atypical MS. Retroviruses are known to potentiate other infections (think HIV patients often die of other opportunistic viruses). Has the MS community dug deeply enough into the viral angle?

In other words, the CAUSE of MS might not be narrowing of the veins exiting the brain, resulting in reduced flow, and iron deposition in the brain. That might be the RESULT of a viral infection, in turn resulting in inflammation of those exit veins, and systemic auto-immune dysfunction, and blockage. And a viral infection might in turn be the result of a myriad of genetic/environmental/host factors.

In other words, all the causes of MS might ultimately be proven to be right, in their own way. Its an and/and proposition. MS might be the result of Chronic cerebrospinal venous insufficiency AND auto-immune dysfunction AND viral infection AND genetic factors AND

Im a rehab medicine professional, physically, if not intellectually sidelined by CFIDS/ME. But if I were a molecular biologist, virologist, vascular specialist, or pathologist, Id want to look even further upstream, with the question in mind: WHY ARE THESE VEINS BLOCKED? Id want to look pronto at biopsy/autopsy specimens of those blocked veins. Do immunohistochemical analysis to look for auto-antibodies against vascular endothelium. Do aggressive viral assays (eg. PCR) to search for an underlying virus or retrovirus.

This might bridge those two seemingly disparate findings: latitude-related MS incidence, and physical changes in blood vessels.

I'm speaking from the perspective of a CFIDS/ME patient with an 11 year case of chronic parvovirus B19 (PVB19). PVB19 is known to cause endothelial inflammation, hence my stroke-like symptoms, atypical angina (coronary artery vasospasm) - and my positive heart biopsy for PVB19, antibodies against endothelium/myocardium, +ve PCR etc. in Germany last year. I can't help wondering if the broader MS population turns out to have XMRV too - or another as-yet undetected virus. I think a virus might be the smoking gun that connects MS with vasculitis. Awful to think, but just imagine if we ultimately had the force of the MS community on board our own quest for liberation from CFIDS/ME/XAND?

Something to think about

Oh, and YES to a Nobel for Dr Zamboni. Ill eat my hat if his results arent replicated. And as a good Canadian, youve gotta love a success story coming from a Zamboni.

 

[leelaplay]

Hi Islandfinn,

Like you Sarah, I have found a lot of support from the MS community at a practical level. I have less in common with many CFS patients.

I have never been particularly fatigued (ME doesn't require fatigue) and never considered it in association with my illness until CFS was invented.

It would be good if this new operation helped some of those with MS. I have lost some good friends.

Mithriel

Hi Mithriel

What a confusing diagnoses you have. I'm glad you found support within the MS community - I think you will here too. So sorry you lost friends to MS. Seems to be a time of hope on both fronts now.

Parvo - you sure gave us a lot to think about. It's going to be a fascinating time seeing what diseases are associated with xmrv, and the work by Zamboni, and people like Cheney and I think Myhill who are seeing heart problems, and what new understandings of disease and the human body develop out of that.

As for Zamboni - I'm sure he'll clean up. (a very bad zamboni joke for those who don't get it)

islandfinn

 

[Mithriel]

All these new insights are so exciting!

It must have been like this when they first discovered bacteria and medicine opened out.

Mithriel

 

[Lily]

Koan and Mithiel....

Would love to be able to discuss more with you regarding your experiences and MS vs ME. Today my brain will not allow me to go into detail, but in short - I have an MS diagnosis, but only as of 6 years ago - my symptoms before that were of fatigue then pain with diagnosis of FM and only 5 months after than a serious episode of ataxia, left-sided weakness and spasticity leading to an MRI indicating an active lesion in the cerebellum.....LP showed Obands and VEP was abnormal......the neurologist said that according to criteria you need another episode...but that in his opinion very likely MS and would recommend treatment with the standard immunomodulators. Oh this was after I had immediate 5 day treatment with IV Solu Medrol (1000mg/day), which immediately reversed the ataxia and left-sided weakness.......however I rapidly deteriorated (over 3 years) with fatigue to the point of being disabled. No further episodes of clear MS, no further lesions noted on MRI. After I quit working I had more time to read and research......my story resonated so much more with CFS - I just couldn't relate to the MS information and didn't find an online MS community.....sorry if I am being incoherrant.....someday I will tell my story on here......too tired now. Hopefully we can discuss sometime......

 

[Lily]

Inappropriate....

Sorry just realized it was probably inappropriate to put that info here as it is off topic....

 

[_Kim_]

Sorry just realized it was probably inappropriate to put that info here as it is off topic....

Your post seemed pretty on-topic to me. MS --> new discoveries --> your history with MS. And I think a new topic discussing MS vs ME diagnoses is a great idea. When you feel up to it, I think that kind of discussion would be of interest to most of us who at one point wondered if we had MS or not.

Cheers,
Kim

 

[parvofighter]

What MSForums are saying about VIRUSES

As a follow-up... thought you might be interested in the conversation happening at This Is MS Forums. I posted a new topic there: "Might CCSVI be caused by a VIRUS?" ( http://www.thisisms.com/ftopict-9010.html ).

A really interesting response from I believe one of the forum leaders:

"Zamboni and others are testing viruses, along with other endothelial disrupters, including bacteria, toxins, cigarettes and low vitamin D. We'll know more in the future. We've seen stenosis caused by cysts, bony structures, and congenital anomalies. There may be some exacerbated by viruses. My Jeff had his CSF checked for EBV, CpN and a multitude of bacterial and viral infections at his first flare....nothing. But his high liver enzymes and high altitude trip the week before pointed the way to hypoxic injury.
Every story is unique, as every MS patient is unique. The one thread in common is stenosis and reflux of blood.
cheer"

In other words it sounds entirely plausible that there may be a subgroup of viral MS patients who might have features of both MS and ME. Kim and Loldershaw, I agree with you both - the post on MS/ME crossover seems VERY "on-topic" indeed. And it raises the question - might there be a productive opportunity for synergy in WPI's diagnostics and Zamboni's?

And Islandfinn - I loved your Zamboni joke. Yes, it was sick, but then again, aren't we all?

 

[MEKoan]

I think a thread to discuss MS vs ME would be great. Actually, I'm not sure that "vs" is useful as there may be more overlap than we think.

That's as much as I can write - I'm suddenly all thunked out.

We need a new thread (tood four tries (argh) to type thread and three to type four!)