CCSVI, cause or symptom?

[Asher]

The immune system is involved in MS, but it may not be involved in the same way as has been thought (autoimmunity).

Cece, you obviously are a smart and alloquent lady. What then is the basis for your supposition? Based on what evidence or conclusive research? Can you share your source?

Thank you and Happy New Year

[Amir]

MarkW wrote:
For Copaxone, my best guess is that the immune system attacks the Copaxone molecule instead of myelin, reducing nerve damage

Amir comments:
This sounds very much like wishful thinking.
The immune system probably does not 'attack' any myelin at all but only does some essential housekeeping following nerve death from various causes.

MarkW replies:
Copxone has been used for 25 years in pwMS and it works well for some pwMS and has lower side effects than interferons. Yet the mode of action is unknown, like most drugs used today. My guess is more than wishful thinking but not conclusive.

The immune system or something else does attack myelin. The first step is probably not myelin attack by the immune system (probably myelin destruction involves astrocytes). De-myelination is observed before neurone death so your statement " The immune system probably does not 'attack' any myelin at all but only does some essential housekeeping following nerve death from various causes. " is incorrect and could mislead TiMS readers.

Beware I am a pedant on MS etiology. MS remains a multi-factorial disease, with factors still emerging.
MarkW

Agreeing with MarkW. Part of the concern with CCSVI is that the lack of shear stress and the reflux weakens the blood brain barrier, which increases the number of adhesion molecules that allow leukocytes through to the brain tissue, where they shouldn't be. The immune system is involved in MS, but it may not be involved in the same way as has been thought (autoimmunity).

Mark
I just got home from the USA but could not help not answering this post.
I respect your pedagoguery but find it surprising.
The fact is that 25 years of Copaxone use has brought about no resolution of MS! Is it not 'resolution' that we are after? Not symptomatic relief?
A respite from the illness could just as well be attributed to the relapsing nature of the illness rather than the benefit from the drug.
The physical nature of CCSVIS findings has done more for MS patients than any drug ever did in a relatively short space of time.
I managed to heal my first MS patient through physical treatment more than 12 years ago. I feel that MS is a Physical illness. In fact I am pretty sure of it. Your advocacy of drug use could support, as per your 'expertise', many other drugs e.g. There is a drug for improving a patients walking which improves the patients walk by 0.88 seconds in a 25 foot walk at $10.000 a year! Some would obviously be blind to this glaring limitation and prescribe this drug and the patients will pay for and take the drug. The DMD's prescribing it would perhaps take umbrage with my stance but my point is that there is absoultely no merit in prescribing such nonsense. Your support of copaxone is your prerogative and you must live by your convictions. I certainly cannot subscribe to such snake oil therapy for my patients. I also refuse to get involved with semantics about irrelavant issues. Patients need results!

Cece
I have read many hundreds from your thousands of postings. It is commendable what you have contributed to the discussion. I like results and avoid fine detail where there are experts who can provide better answers than I could ever find. Dr Sclafani in his commendable paper writes:

"Zamboni proposes that CCSVI has a role in the pathogenesis of MS. He suggests that resistance to cerebrospinal venous outflow causes vicarious redistribution through small collateral veins that cannot handle high flow. He also suggests that tight endothelial junctions widen to allow diapedesis of red blood cells, T cells, and other immune cells into the brain, resulting in inflammation and hemosiderosis that is reminiscent of what is seen with venous insufficiency of the lower extremities. This is supported by iron deposition as seen on susceptibility-weighted magnetic resonance imaging (SW-MRI), which reveals that the inflammatory MS plaques always surround a central venous structure. MRI shows that the central vein and surrounding plaque have abnormal quantities of iron. Pathologically, the basement membranes of these deep veins are thickened, and hemosiderin deposits are present in the wall of and adjacent to the deep cortical veins. T cells and macrophages violating the blood-brain barrier provide a working explanation for the autoimmune cascade that result in demyelination and the neurological manifestations associated with MS."

I like this explanation and go along with it except the word 'autoimmune' in the last line which I may want to call 'excessive autoimmune' response
Such excessive responses causing damage are common place. In the SARS epidemic in China treating the patients with just antibiotics without a steroid invariable ended their lives. Giving high doses of steroid concommitantly saved them. So we know that this excessive response can be damaging. In acute illness there is an application for steroid use. However willy-nilly use of steroids or any other medication without knowing how it works is a reprehensible practice. Many a patient using Symptom Suppressing Medication (SSM) to treat non MS symptoms has seriously damaged their chances of recovery.

[Cece]

It is hard to disagree with Dr. Sclafani or Dr. Zamboni! We should quote them in every thread.

There is an 'autoimmune' clean-up in ischemia (stroke) which has never been called an autoimmune disease.

Dr. Zamboni's explanation of CCSVI fails to mention the possibility of hypoxia playing a role, nor the effects of CCSVI on cerebrospinal fluid flow or on the autonomic system. These are all interesting to me as possible explanations for the immediate improvements sometimes seen when CCSVI is treated.

Asher was looking for support on what I'd said, but I think the first part (that the immune system is involved in MS) is common knowledge in neurology journals and the second part (that it may not be autoimmune) is also commonly accepted, since the autoimmune theory is referred to as theory and not fact. An antigen has never been found in MS as it has for other illnesses. Areas of the brain such as the gray matter are now known to be involved early in the disease process, making an autoimmune attack exclusively on the white matter not a great explanation for why gray matter is damaged. There was an Australian case study in which a woman passed away of a sudden MS lesion. There were no leukocytes or immune system involvement to be found. Autoimmune theory also fails to explain the damage done to the retinal nerve sheath of the eye, which lacks myelin, in many MS patients; venous congestion however could explain this.

Copaxone has research to support its use in MS. Many articles here: http://scholar.google.com/scholar?hl=en ... =&as_vis=0

If the benefits of jaw or atlas aligning cannot be proven, then it must remain an alternative option, and we are indeed a patient population that is willing to try all reasonable options. EJC's testimony is of interest, because he is known here, and there is no reason to doubt what he says about his wife's improvements after jaw alignment.

[Asher]

Being right for the sake of being right is not my game. What prompts me to respond to some of the posts is the amount of speculation that is being presented as fact. Just take the last 2 posts:

a woman passed away of a sudden MS lesion.

Since when do people die of MS lesions? I am aware of people passing away as a result of secondary MS complications. Who established this causal relationship? To my humble mind another example of anactotal so called 'evidence' that comes to prove nothing at all.

There is an 'autoimmune' clean-up in ischemia (stroke) which has never been called an autoimmune disease.

What is the point you are trying to make here? Stroke and other coronary disease are triggered by a sclerotic process which involves inflammation. Inflammation triggers an immune response (which is already present well before the stroke). This is scientific fact. Any attempt to link this to MS is, at this stage, at best unsubstantiated theory.

Finally, a quote from Dr. Amir:

I managed to heal my first MS patient through physical treatment...

I feel that MS is a Physical illness. In fact I am pretty sure of it.

How much more rubbish can the honerable members of this forum continue to tolerate?

Members of the CCSVI community did not spare George Goss (who underwent HSCT, a clinically proven MS procedure with curative results) nor criticism nor insult for claiming to be cured. I wonder whether Dr. Amir's bold statement will meet the same kind of critical response.

[Cece]

a woman passed away of a sudden MS lesion.

Since when do people die of MS lesions? I am aware of people passing away as a result of secondary MS complications. Who established this causal relationship? To my humble mind another example of anactotal so called 'evidence' that comes to prove nothing at all.

It was a published case study, from Australia. The lesion was in the brainstem. It has been discussed here at TiMS before.

[EJC]

Finally, a quote from Dr. Amir:

I managed to heal my first MS patient through physical treatment...

I feel that MS is a Physical illness. In fact I am pretty sure of it.

How much more rubbish can the honerable members of this forum continue to tolerate?

Members of the CCSVI community did not spare George Goss (who underwent HSCT, a clinically proven MS procedure with curative results) nor criticism nor insult for claiming to be cured. I wonder whether Dr. Amir's bold statement will meet the same kind of critical response.

The lady in question on this case is called Mary Macguire.

She's mentioned in this article:-

http://www.thisislondon.co.uk/health/ar ... ralysis.do

I guess you could ask her directly, her contact details are available if you're genuinely interested.

Coincidentally I met the other chap mentioned in that article this morning when I took Emma in for a check up with Amir. He will be reading this forum and may or may not choose to take part in the discussion as he is interested in the benefits of CCSVI (long term).

[Cece]

http://www.thisisms.com/forum/chronic-c ... 10023.html

From the UK MSRC a new study released on January 30 2010:

Australian study questions established concepts of early disease events in MS

Investigators at the University of Sydney have published a study suggesting that the earliest activity seen in the brain in MS is the destruction of cells that make myelin (oligodendrocytes), occurring before the onset of immune activity usually blamed for triggering the disease.

This provocative study, co-funded by many sources including the National MS Society, opens up new possibilities for finding the cause of the disease and developing new treatments. The study is authored by Drs. John W. Prineas, Andrew P.D. Henderson and colleagues, and is published in the December issue of Annals of Neurology (2009;66:739–753).

Background: Multiple sclerosis has long been thought to be triggered by immune attacks in the brain and spinal cord, causing a spectrum of neurological symptoms. Extensive research has been underway to better understand what triggers the immune attacks and which immune cells are involved, and to better understand the damage to the central nervous system that occurs during the course of MS. In addition to studies of immune activity underlying what has been considered an autoimmune process, another important approach has centered on pathology studies involving microscopic explorations of MS lesions (damaged areas, also called plaques) in the brains of people with MS.

The lead author of the current study, John W. Prineas, MB, BS, FRCP, was the 2001 winner of the John Dystel Prize for MS Research, an award given jointly by the National MS Society and the American Academy of Neurology. He was recognized for being the investigator who first described how myelin, the substance that insulates nerve fibers, is broken down in MS, and he was the first to demonstrate that myelin repair occurs during the course of MS through the body’s natural repair processes.

Current Study: For this study, the team used brain specimens from 11 people who had died early in the course of their MS, and the team also used comparison specimens from people with other disorders including stroke. Some of the tests focused on subsets of specimens from seven people who had lesions showing active myelin destruction. To get a sense of immune cell activity in the brain and at what stage it was occurring, the team examined newly active and resolved lesions, as well as nearby blood vessels, surrounding areas showing some disease activity and surrounding areas that appeared normal, and areas that were farther away from the lesions of interest.

Results: In tissues surrounding newly forming lesions, the investigators found evidence of the loss of oligodendrocytes with an absence of immune T or B cells that would normally be held responsible for launching the immune attack against oligodendrocytes and the myelin they produce. These and other immune cells, including scavenger cells (macrophages and microglia), were more numerous in lesions and surrounding tissues at apparently later stages of destruction and sometimes in lesions that were in the process of repair. In specimens from two very early cases of clinical onset of disease, they found few immune cells within the lesions and no evidence of activation of scavenger cells.

These and other unexpected findings from this study led the investigators to propose that the early immune activity seen in active lesions is that of macrophages and microglia, whose job it is to clean up and remove damaged myelin.

They propose that lesion formation is caused by something other than destructive immune activity led by inflammatory cells against a component of myelin or oligodendrocytes.

Comment: This study is a significant addition to a small but growing body of evidence that highlights the question of what triggers MS and whether there is something other than, or in addition to, the immune attacks that lead to tissue damage in the brain and spinal cord of people with MS. Further research, which is ongoing by investigators around the world, should shed further light on this question and may offer novel treatment approaches.

Note: The availability of donor brain specimens was crucial to this and other studies focusing on disease pathology

Source: US National Multiple Sclerosis Society (30/01/10) January 30, 2010

Not the one I was referencing, but a different one that showed up in a tims google site search for the first one. This also supports the idea that MS lesion formation is caused by something other than destructive immune activity led by inflammatory cells against a component of myelin or oligodendrocytes, as stated above.

And this research posted by Marie, as well as the whole thread, which is an old one:
http://www.thisisms.com/forum/general-d ... tml#p53739

[Amir]

It is hard to disagree with Dr. Sclafani or Dr. Zamboni! We should quote them in every thread.

There is an 'autoimmune' clean-up in ischemia (stroke) which has never been called an autoimmune disease.

Dr. Zamboni's explanation of CCSVI fails to mention the possibility of hypoxia playing a role, nor the effects of CCSVI on cerebrospinal fluid flow or on the autonomic system. These are all interesting to me as possible explanations for the immediate improvements sometimes seen when CCSVI is treated.

Asher was looking for support on what I'd said, but I think the first part (that the immune system is involved in MS) is common knowledge in neurology journals and the second part (that it may not be autoimmune) is also commonly accepted, since the autoimmune theory is referred to as theory and not fact. An antigen has never been found in MS as it has for other illnesses. Areas of the brain such as the gray matter are now known to be involved early in the disease process, making an autoimmune attack exclusively on the white matter not a great explanation for why gray matter is damaged. There was an Australian case study in which a woman passed away of a sudden MS lesion. There were no leukocytes or immune system involvement to be found. Autoimmune theory also fails to explain the damage done to the retinal nerve sheath of the eye, which lacks myelin, in many MS patients; venous congestion however could explain this.

Copaxone has research to support its use in MS. Many articles here: http://scholar.google.com/scholar?hl=en ... =&as_vis=0

If the benefits of jaw or atlas aligning cannot be proven, then it must remain an alternative option, and we are indeed a patient population that is willing to try all reasonable options. EJC's testimony is of interest, because he is known here, and there is no reason to doubt what he says about his wife's improvements after jaw alignment.

Cece
Thank you for this. I have only been deeply involved in this subject for some 4 weeks or so. I appreciate that I have a lot of learning to do yet.
Actions speak louder than words. I have not asked any of my patients to write here but I soon shall.

You have your own experiences with the illness and the way you have furthered your knowledge. I have my own from seeing very many patients with an array of illnesses not just MS. My conclusions and observations are based on a vast amount of practical experience over very many years and what I say is after careful thought. Off course there will be disagreements and constructive criticism is most welcome.

There is more to learn everyday from people with the humblest knowledge.

Hope we learn from each other.

Your input is very scholarly and very much appreciated.

[Amir]

Being right for the sake of being right is not my game. What prompts me to respond to some of the posts is the amount of speculation that is being presented as fact. Just take the last 2 posts:

Finally, a quote from Dr. Amir:

I managed to heal my first MS patient through physical treatment...

I feel that MS is a Physical illness. In fact I am pretty sure of it.

How much more rubbish can the honerable members of this forum continue to tolerate?

Members of the CCSVI community did not spare George Goss (who underwent HSCT, a clinically proven MS procedure with curative results) nor criticism nor insult for claiming to be cured. I wonder whether Dr. Amir's bold statement will meet the same kind of critical response.

I am sorry to say this but your call to arms appears to have gone unheeded. Perhaps the rest of the more astute readers have read about my work on other threads and decided to be more cautious than your blatant conclusion of 'rubbish'.

Ask Mary Maguire as suggested by EJC, and many others if they would give your comments the light of day.

After making the comments that I did I would have expected a rational person to ask for evidence. Your style of guilty before proven so is uncouth and crude.

My comments about 'MS being a physical illness' required the opening up of a huge debate so that I can put my point across so the honourable members of this forum can advance their knowledge. I may be proven wrong. I could also be right against the might of big pharma and the phenomenal resources of the scientific community who have not gotten anybody anywhere.

Dr Zamboni's lone voice has now for the first time made a huge difference in many peoples lives. They have hope for the first time in their lives instead of facing the inevitable.

Having read countless thousands of posts on these threads in the last month I still feel that CCSVI is probably on balance half the answer for many. The other half lies in the subject of Cranio Dental and Skeletal Symmetry which I have championed for very many years and achieved phenomenal results. Many units especially in the UK and CA are already advising patients to seek such correction judging from the enquiries I am receiving.

In spite of the huge knowledge base of seasoned veterans of this forum only a couple were aware of what I espouse. You personally chose to close the door on a very important aspect of patient health. One that probably would save the life of those not entirely benefitting from CCSVI. It would take some out of the 'MS club' altogether as their problem is probably entirely related to TMD inspite of brain lesions. In 12 years I have not had one patient deteriorate and all have gotten better and some have completely recovered. I now have quite a few patients who have had CCSVI treatment which has made little or no difference. My philosophy may be their saving grace.

Therefore my advice to you sir, is, stop being judge and jury and give rational thought, rational debate and astute observation a chance. It may come from a humble reader with no knowledge about the subject or it may come from a seasoned professional. Do not dash the hopes of many who rely on me either at present or in the future.

[MarkW]

Hello Amir,
As a pedant I cannot allow some of your misleading statements:
Amir wrote: The fact is that 25 years of Copaxone use has brought about no resolution of MS! Is it not 'resolution' that we are after? Not symptomatic relief?
MarkW replies:
MS drugs do not offer resolution from MS. In a subset of pwMS they slow the progression of the disease, that is all. Resolution is a long way away in my view.
Amir wrote: The physical nature of CCSVIS findings has done more for MS patients than any drug ever did in a relatively short space of time.
MarkW replies:
I advocate using de-stenosis and immune systems drugs not just one of them. With this multifactorial disease we should use all the tools at our disposal.
Amir wrote: I managed to heal my first MS patient through physical treatment more than 12 years ago. I feel that MS is a Physical illness. In fact I am pretty sure of it.
MarkW replies:
If your physical treatment cured MS in all patients that would be great, but I have not seen evidence of this. I agree that if pwMS have physical symptoms they should be treated. Your leap to say that MS is a Physical illness rather than a multifactorial one is not supported by evidence.

MarkW comments: I advocate trying drugs for pwMS. I have seen remarkable results even with interferon. I do not discount drugs before they are tried with a particular patient. PwMS respond differently to drugs and there is no proper explanation as why this happens.

My first recomendation to pwMs is to take 5000iu/day of Vitamin D3. That costs about 15gbp/year so should be the first step in treating the symptoms of this multifactorial disease called MS. Physical/vascular treatments and expensive drug treatments may be added if affordable.

MarkW

[euphoniaa]

Mark W - FYI, you've confused and combined Asher and Amir's statements in your post above. I hope you can revise your post to make it clear which you're talking to. You may have to scroll back through the whole thread to find the originator of the statements you are replying to.

P.S. It makes it a lot easier to separate quotes from responses if you hi-light a direct quote and hit the "Quote" button while you're typing your reply. It will make it stand out from your replies. And make sure the correct poster is attributed to it. You can attribute the quote above it (like Asher did) even if you're using quotes from several different people.

[EJC]

MS drugs do not offer resolution from MS. In a subset of pwMS they slow the progression of the disease, that is all. Resolution is a long way away in my view.

There's your problem, big Pharma isn't really looking for the end game. It would be like finding the everlasting light bulb, i.e a financial bomb. It's only ever producing products that may slow or inhibit progression in some people, if you're lucky, at around £10K to £20K a year thanks very much. If you're not lucky the drug may actually produce side effects that may kill you.

I don't believe drugs are the answer to any of it, though they may well provide some transient relief. In Emma's case she takes valium on the occassions (now thankfully reducing) that her neuralgic pain becomes to great to bear.

We gave up seeing Emma's Neurologist the day he said "there won't be a cure for MS in your lifetime" he then recommend we try another DMD and continues to refuse to consider anything other than drug based treatment. Thanks but no thanks.

The thing is, all the time the money follows the drugs, the investment in actually finding the elusive cure is being underfunded to the tune of millions to one - there aren't many shareholders in "MS is a physical/venous problem PLC"

CCSVI has opened the gates to a new way of approaching MS and it is about time as the current "best theory" of Autoimmune disease hasn't progressed much in the 100+ years since MS was first described in 1868.

Lets embrace the idea that physical problems may actually be the way out of this awful MeSs. Be they vascular or skeletal.

[dania]

MS drugs do not offer resolution from MS. In a subset of pwMS they slow the progression of the disease, that is all. Resolution is a long way away in my view.

There's your problem, big Pharma isn't really looking for the end game. It would be like finding the everlasting light bulb, i.e a financial bomb. It's only ever producing products that may slow or inhibit progression in some people, if you're lucky, at around £10K to £20K a year thanks very much. If you're not lucky the drug may actually produce side effects that may kill you.

I don't believe drugs are the answer to any of it, though they may well provide some transient relief. In Emma's case she takes valium on the occassions (now thankfully reducing) that her neuralgic pain becomes to great to bear.

We gave up seeing Emma's Neurologist the day he said "there won't be a cure for MS in your lifetime" he then recommend we try another DMD and continues to refuse to consider anything other than drug based treatment. Thanks but no thanks.

The thing is, all the time the money follows the drugs, the investment in actually finding the elusive cure is being underfunded to the tune of millions to one - there aren't many shareholders in "MS is a physical/venous problem PLC"

CCSVI has opened the gates to a new way of approaching MS and it is about time as the current "best theory" of Autoimmune disease hasn't progressed much in the 100+ years since MS was first described in 1868.

Lets embrace the idea that physical problems may actually be the way out of this awful MeSs. Be they vascular or skeletal.

If "Big "Pharma" had not be waylaid-ed off the correct path by "doctors" believing our problem is autoimmune then maybe they would of looked for medications to help in the vascular area, such as better vasodilators, meds to promote epithelium health, something to stop restenosis and/or scarring in the treated veins, replacement valves and veins for our defective ones. And something to restore the destoyed myelin. The possibilities are endless.

[Amir]

Hello Amir,
As a pedant I cannot allow some of your misleading statements:

Hello MArkW
You are inebriated with your ostentatiousness. You miss the point all together with your pedantry.

Amir wrote: The fact is that 25 years of Copaxone use has brought about no resolution of MS!
Is it not 'resolution' that we are after? Not symptomatic relief?
MarkW replies:
MS drugs do not offer resolution from MS. In a subset of pwMS they slow the progression of the disease, that is all. Resolution is a long way away in my view.

Excellent. Yes in your case, the way you see the world resolution is definitely a long way off.
Not for me.
Just allow everyone else to have a chance to get better. How can a physical problem get better with a drug?
EJC is a prime example. I doubt if she even has 'MS'.
The system has been hijacking these patients into chronic illness and then keeping them there with drugs which do not cure. What an amazing Powerball game. Win Win Win and Win again. Never mind the poor sauls who are the victims of the evil that pervades society.
No wonder her drug treatment was an utter failure.
Physical Problems need Physical Solutions.
Open up the Vessels. Fix the Atlas. Fix the Cranial and Skeletal Asymmetry.
Not snake oil, Voodo or some Mumbo Jumbo.

Amir wrote: The physical nature of CCSVIS findings has done more for MS patients than any drug ever did in a relatively short space of time.
MarkW replies:
I advocate using de-stenosis and immune systems drugs not just one of them. With this multifactorial disease we should use all the tools at our disposal.

Not multifactorial. Three dimensional and needs three dimensional physical correction with nominal palliative medication for pain.

Amirr wrote: I managed to heal my first MS patient through physical treatment more than 12 years ago. I feel that MS is a Physical illness. In fact I am pretty sure of it.
MarkW replies:
If your physical treatment cured MS in all patients that would be great, but I have not seen evidence of this. I agree that if pwMS have physical symptoms they should be treated. Your leap to say that MS is a Physical illness rather than a multifactorial one is not supported by evidence.

Your audacity is beyond redemption. When did you ask for evidence? Do you ever read anything properly? You even confused my name with Asher which I have corrected in this post as I have gone along.
If my treatment cured just one patient I have done better than millions who have taken your Copaxone which you admit is not geared to cure, other times you admit the drugs are only checked for patient safety not whether they do anything or not.
Your advocacy of something that you admit is at best experimental is the height of absurdity.

MarkW comments: I advocate trying drugs for pwMS. I have seen remarkable results even with interferon. I do not discount drugs before they are tried with a particular patient. PwMS respond differently to drugs and there is no proper explanation as why this happens.

Absurd! I value your intransigence though. Promotes a healthy discussion!

[EJC]

If "Big "Pharma" had not be waylaid-ed off the correct path by "doctors" believing our problem is autoimmune then maybe they would of looked for medications to help in the vascular area, such as better vasodilators, meds to promote epithelium health, something to stop restenosis and/or scarring in the treated veins, replacement valves and veins for our defective ones. And something to restore the destoyed myelin. The possibilities are endless.

All of this would follow once they just work out why people get these symptoms to start with. All of the above is addressing symptoms, address the probem and it's not long before there are no symptoms to deal with.