CCSVI, cause or symptom?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Johnnymac
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Re: CCSVI, cause or symptom?

Post by Johnnymac » Wed Dec 28, 2011 7:56 am

a pulse is just a term for a treatment over a period of a few days, nothing special about that word in particular.

The reason I say inflammation of the brain is she had an MRI done at the time which showed measurable swelling, which went away after the steroid treatment and has not come back (yet). Because those symptoms were all related to and apparently caused by the discontinuation of Tysabri, which we all know is a dangerous drug, we've always attributed it to that, not her MS. She has never had speech problems, ataxia problems before or after that episode thank goodness.

I am very intrigued about jaw issues, as I mentioned earlier, only a short time before her MS symptoms started she went through oral surgery to remove her wisdom teeth, which did not go well. Since that time she has suffered from TMJ, which is severe times, and to this day on queue is she opens her mouth past a certain point there is an audible popping sound in her left jaw area (and pain).

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Amir
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Re: CCSVI, cause or symptom?

Post by Amir » Wed Dec 28, 2011 9:01 am

Johnnymac wrote:a pulse is just a term for a treatment over a period of a few days, nothing special about that word in particular.

The reason I say inflammation of the brain is she had an MRI done at the time which showed measurable swelling, which went away after the steroid treatment and has not come back (yet). Because those symptoms were all related to and apparently caused by the discontinuation of Tysabri, which we all know is a dangerous drug, we've always attributed it to that, not her MS. She has never had speech problems, ataxia problems before or after that episode thank goodness.

I am very intrigued about jaw issues, as I mentioned earlier, only a short time before her MS symptoms started she went through oral surgery to remove her wisdom teeth, which did not go well. Since that time she has suffered from TMJ, which is severe times, and to this day on queue is she opens her mouth past a certain point there is an audible popping sound in her left jaw area (and pain).
A bit late in the day but I wrote this article on wisdom teeth many years ago:

http://www.positivehealth.com/article/d ... extraction

awdesigns8
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Re: CCSVI, cause or symptom?

Post by awdesigns8 » Wed Dec 28, 2011 10:28 am

doing ccsvi is not a cure as montel willaims says but it helps with the symptoms of ms just like steroids do once you take away some inflammation you take away the symptoms thats why eating right help finding what to eat we even have foods to help our restore mylen to get better ann boroch has no ms symptoms for 16 years check her out on you tube people who have done ccsvi some still take the shot or the pill for ms . i say take what you want for your ms s long as it helping with the symptoms you have what is so wrong with taking them .love ya april

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MegansMom
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Re: CCSVI, cause or symptom?

Post by MegansMom » Wed Dec 28, 2011 12:18 pm

One must remember the routes of the blood emptying are varied depending on position of the body ( upright vs prone/supine) AND location and severity of the anomalies that partially block normal flow. (mal formed valves, webs, etc- each has a unique flow impeding %) these are quite variable.

You are born with the malformations so during periods of lying down supine or prone ( not propped up) the blockages would cause a very slight lowering of normal perfusion. This would occur for many years and the young otherwise healthy body would compensate by increasing breathing rate or heart rate slightly. It would be like living in a poor environment smog, with smokers etc...very slow impact.

This is chronic, that is key. Over many years of being starved of the normal amounts of glucose and oxygen evenutally the brain cells cannot compensate and cells in the brain and/ or spinal column rather than being damaged and healing, die.
Also the turbulance caused by refluxed flow can damage red blood cells and leave iron in tiny microscopic openings in the junctions between cells(BBB) Iron is very irritating and would cause its own inflammation as it breaks down ( like rust oxidation)
So in the brain tissue you have an environment that changes with position. Allowing more oxygen ( in most cases) when upright, less so when lying down.
Also they always thought that he MS lesions viewed on MRI were areas of damage causing the MS symptoms... But the motor symptom locations or speech or hought problems never mapped to the areas identified or those functions( like neurosurgeons map) But how about if these areas are the areas where pressure is put on the venules from backflow and the body just puts fibrinous tissue there to reinforce the vessel walls and mend the areas of inflammation from the iron?
Degree of infirmity with MS and amount of MS lesions never really map. Although MS lesions seem to get more frequent over time, people with many symptoms sometimes have few lesions and some with few synptoms have many lesions. The immune system comes in after the inflammation.and over time the immune system can really get overworked. It also always bothered me that the ANA test was never positive ir MS but it was for other "auto-immune diseases".

I don't think MS lesions are anything but the bodies attempt to heal damaged venule vessel walls, layers of fibrous changes, like a scar. Sort of sandbagging the vein walls. Neurologists use MRI with lesion loads as progression markers but they dont mirror true progression ( getting worse symptoms) just progression in time. The real damage seems to be caused by starved gray matter- starved of both oxygen and glucose... Part of every 24 hr day during sleep in most cases... Most of the day is upright afterall. And the body will also oxygen starve other organs to preserve the heart and brain, hence numbness, muscle spasms, etc. Also the eye is very sensitive to oxygen depravation and frequently optic neuritis and vision symptoms occur. Quite frequently these are the very first symptoms to show themselves.

So far all of the CCSVI physiology seems to fall in to place for me. I have been an RN for close to 40 years and it all seems ti fit for me.

These are just my rudamentary understandings and ideas of cause/effect. Hope they help.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

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Amir
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Re: CCSVI, cause or symptom?

Post by Amir » Wed Dec 28, 2011 1:24 pm

MegansMom wrote:
So far all of the CCSVI physiology seems to fall in to place for me. I have been an RN for close to 40 years and it all seems to fit for me.

These are just my rudimentary understandings and ideas of cause/effect. Hope they help.
Your rudimentary understandings are quite potent and in fact more correct than many other postings I have seen here

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Re: CCSVI, cause or symptom?

Post by EJC » Thu Dec 29, 2011 2:41 pm

That's a great description MegansMom.

The only part I personaly struggle with is "you are born with the malformations". I'm not sure if this is assumption or fact, has this actually been researched in any shape or form?

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Re: CCSVI, cause or symptom?

Post by Cece » Thu Dec 29, 2011 3:01 pm

Didn't Zivadinov look at pediatric MS? Or is that one of the "7 research studies" funded by the MS society?
The presence of CCSVI in the young makes it more likely that CCSVI is a congenital or early-arising condition, and less that it is a result of MS in any way.

MegansMom, your clear explanations are appreciated as always!

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MrSuccess
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Re: CCSVI, cause or symptom?

Post by MrSuccess » Thu Dec 29, 2011 4:03 pm

I would like to add this ....... young children do get MS.

CCSVI's core argument is ..... abnormalities within the NECK.

Some children are delivered using forceps. This is barbaric to watch.

I suggest that this induces TRAUMA to the neck of the infant.


Trauma >>>>> INFLAMMATION >>>>>>> CCSVI >>>>>> MS .......

No doubt about it.


MrSuccess

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Amir
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Re: CCSVI, cause or symptom?

Post by Amir » Thu Dec 29, 2011 6:11 pm

MrSuccess wrote:I would like to add this ....... young children do get MS.
CCSVI's core argument is ..... abnormalities within the NECK.
Some children are delivered using forceps. This is barbaric to watch.
I suggest that this induces TRAUMA to the neck of the infant.
Trauma >>>>> INFLAMMATION >>>>>>> CCSVI >>>>>> MS .......
No doubt about it.
MrSuccess
What you refer to is called Erb’s palsy; an abnormal or difficult childbirth or labour. It can occur if the infant’s head and neck are pulled toward the side at the same time as the shoulders pass through the birth canal. Furthermore, the condition can be caused by excessive pulling on the shoulders during a head first delivery or by pressure on the raised arms during a feet first delivery. The damage appears to resolve early in life but some cases need surgical intervention. There may be residual damage which goes unnoticed from such occurences. The impact of such trauma probably affects the Atlas, the rest of the cervical vertebrae and the proper development of the cranium which leads to far more serious problems setting in later in life.

The genetic hypothesis affecting the IJV's is quite separate from this trauma.

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Re: CCSVI, cause or symptom?

Post by CureOrBust » Fri Dec 30, 2011 2:13 am

MrSuccess wrote:CCSVI's core argument is ..... abnormalities within the NECK.
I think you will find this your own mis-understanding, not the originators and researchers of CCSVI. The actual acronym covers the "core argument" pretty well in my opinion. Unless you meant something else by the "......"?

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Re: CCSVI, cause or symptom?

Post by CureIous » Fri Dec 30, 2011 3:02 pm

Great synopsis Megans Mom!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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MarkW
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Answer to earlier question

Post by MarkW » Sun Jan 01, 2012 6:28 am

I wrote:
My next steps are x-rays of my skull/neck to investigate/rule out problems.

EJC - Emma had skull and teeth x-rays done a few weeks back. Who will be assessing your X-Rays?

I do not publish my personal treatments as they happen. Usually I wait 6 months before saying very much. The great advantage of having X-Rays taken soon is that many people can offer opinions. It worked well for my venograms taken in June 2010 in Athens.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

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MS Etiology and Copaxone

Post by MarkW » Sun Jan 01, 2012 6:46 am

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
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

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MarkW
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Drug testing is for SAFETY

Post by MarkW » Sun Jan 01, 2012 6:59 am

It is important to understand that drug testing is mainly to ensure that people do not suffer harm rather than to understand how a drug works. It may be mind boggling but this is the actual stuation for the majority of drugs.
MarkW

The earlier discussion:
MarkW wrote:
Let me share a pharmaceutical secret - the people in white coats cannot tell you how the majority of drugs work (I am serious). For Copaxone, my best guess is that the immune system attacks the Copaxone molecule instead of myelin, reducing nerve damage (well maybe and that is after 25 years of pwMS taking the drug).

EJC commented:
We were provided with an explanation similar to the above and our decision to stop was based on this. The pharmaceutical manufacturer doesn't actually know what the drug does or how it works, it's a guess and they can sell this to the NHS for £10K or £20K a year? The mind boggles.
It also begs the question, If they don't know how it works how do they know it's not doing any harm?
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

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Re: MS Etiology and Copaxone

Post by Cece » Sun Jan 01, 2012 11:56 am

MarkW wrote: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).

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