This Is MS Multiple Sclerosis Knowledge & Support Community

https://twitter.com/#!/CCSVI_Society
I'm separating out the doctors into different threads because there is just so much information coming in.

Dr. Zivadinov: The veins of MS patients with CCSVI are significantly further apart than healthy controls with CCSVI

!!! A difference between the healthy controls with CCSVI and the MS patients with CCSVI. But what does it mean? If our veins are further apart, is there more brain tissue relying on each vein? Or is it that the healthy patients with CCSVI responded with angiogenesis, making newer veins closer together to compensate for the dysfunction in outflow, and patients with MS did not compensate in this way?

Dr. Zivadinov: Lesions are localized b/c cerebral blood flow is compromised locally; otherwise lesions would be everywhere

Dr. Zivadinov: Extracranial collatoral circulation has developed to manage the deficiencies of the jugular outflow

Robert Zivadinov: CCSVI does exist & is not unique to MS & is present in other neurological & non-neurological diseases & healthy controls.

Dr. Zivadinov: MS patients have about 20% decreased venous volume i terms of all the vasculature of the brain

Dr. Zivadinov: Lower cerebrospinal flow is linked to MS deveopment and progression

Dr. Zivadinov: CCSVI is as prevalent in other neurological diseases as it is in MS (50-60% of all patients blind tested)

Dr. Zivadinov: Irritable bowel syndrome is a consequence of CCSVI

Dr. Zivadinov: Not clear if iron is primary or secondary to MS, but iron levels closely related to degree of inflammation

Dr. Zivadinov: "ideal modality is multi-modal imaging to increase confidence that a stenosis is there."

Dr. Zivadinov: Nothing can stop scientific curiosity

Dr. Zivadinov: Perfusion damage & oxidative stress are a result of decreased capillary bed blood flow

http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
page 51

Is CCSVI a disease? (Robert Zivadinov, USA)

A condition called chronic cerebrospinal venous insufficiency (CCSVI) has been proposed and reported with
high frequency in patients with multiple sclerosis (MS), although the condition was also found in patients with
other CNS diseases and subjects without known CNS pathology. More recent reports suggest that some non-
CNS diseases (especially of the bowel system) may be associated with CCSVI. CCSVI is described as a vascular
condition characterized by anomalies of the main extra-cranial cerebrospinal venous routes that possibly
interferes with normal blood outflow of brain parenchyma. In order for CCSVI to be a disease, a phenotype of
clinical symptoms associated with this condition needs to be determined. The rate of transfer of nutrients
(primarily oxygen and glucose) from the capillary bed into the brain fluid is proportional to the rate of blood
flow through the capillary bed. An obstruction of the extra-cranial venous drainage pathways may significantly
reduce the supply of brain nutrients and potentially result in hypoxia. In a recent prospective, 12-month,
Endovascular Venous Treatment for MS (EVTMS) follow-up study that enrolled 15 MS patients, we noticed that,
post intervention, the majority of treated patients reported immediate temporary improvements in subjective
complaints of fatigue and cognitive impairment. In another recent study, the reestablishment of cerebral
venous return reduced chronic fatigue perception in a group of 31 MS patients with CCSVI who underwent the
endovascular procedure, suggesting that fatigue could likely be associated with CCSVI. Neither study was
randomized, controlled or blinded; however, both suggest that the impact of removing an obstruction in the
IJV or azygos veins could increase blood flow through the cerebral capillary bed, with consequent increase in
the transfer of oxygen, glucose and other nutrients into the brain, which may result in immediate temporary
reduction of subjective complaints of fatigue and cognitive impairment. Additional improvement of symptoms
may be related to PTA of extra-cranial veins. These include headache, sleep disturbances, brain fog, and
heating. It remains to be determined whether the presence of CCSVI is characterized by a particular clinical
phenotype in patients with CNS and non-CNS diseases. The clinical phenotype will likely depend on the
regional predilection of CCSVI pathology.

from Danielle Rheume on twitter:

Zivadinov: Hypothesis of neurogeneration in MS-->Cortical pathology one of the most controversial parts of MS disease activity.

Neurodegeneration, I think it what's being discussed. Why is cortical pathology one of the most controversial parts of MS disease activity? Does CCSVI provide an explanation for cortical pathology?

twitter from danielle rheume of thinkccsvi.com

Zivadinov: Is CCSVI a disease? 3 types of abnormalities: Intraluminal, extraluminal, functional

Zivadinov: Moving talk on "Is CCSVI a disease or a syndrome?" He concludes that it IS a disease that causes many symptoms and other diseases

We have talked about this here at length. Over in MarkW's syndrome thread, I think it was, I referenced the definition of disease and the definition of syndrome, and CCSVI appear to qualify as a disease, as Dr. Zivadinov asserts as well. But there are diseases such as AIDS that were first thought to be syndromes and then, after becoming recognized as a disease, kept the syndrome in their name (the 'S' in AIDS).

What is meant in that first tweet? I know what an intraluminal abnormality is and what an extraluminal abnormality is but what is meant by functional abnormality?

http://www.facebook.com/pages/Hubbard-F ... 9665829860
I am really liking what we've been hearing from Dr. Zivadinov. He has raised good questions.

Dr Zivadinov
Is CCSVI a disease?
Timelines
Classification of venous anomalies inta luminal and exta luminal, reflux, paradox, no flow, degree of flow anomaly
MS is associated with CCSVI and PD and Migraine. Many neuromuscularand autoimmune are affected, bowel is definitely affected,

Is ccsvi a disease or a syndrome?
Is CCSVI and adequate term to reflect all that was discovered in the last 2years?
More studies need to be done
If so many diseases are associated with CCSVI we need to look at other outcomes based on the fundamental disease of CCSVI
YES CCSVI does exist! It ‘s probably a disease , not a syndrome.
Treatment should be done as part of research

Yes to the idea of looking at other outcomes based on the fundamental disease of CCSVI! This is not about treating MS, or Parkinsons, or migraine. This is about treating CCSVI. I celebrate the day I was diagnosed with CCSVI, because symptoms I had lived with for so long finally had an explanation, and the explanation was not MS but CCSVI, and it was treatable.

Dr Z is clearly willing to let the science go where it may. That is the mark of a good scientist. Exactly the kind of thinking we need!

Dr. Zivadinov: Lower cerebrospinal flow is linked to MS deveopment and progression

Dr. Zivadinov: Nothing can stop scientific curiosity

Upright MRI study comes to mind
Part 1
http://www.fonar.com/news/100511.htm
Part 2
http://www.sfgate.com/cgi-bin/article.c ... 929674.DTL

i wish i had a link to the few Upper Cervical Care studies HappyPoet was in. and there's more to come

Wouldnt it be sweet if UCC stopped MS progression with ccsvi reversing some symptoms and damage from MS, some of my symptom are gone already just from UCC i might be getting ahead of myself lol

Chronic Fatigue, and heat sensitivity (and maybe loss of strength?) are in my mind connected with a loss (somewhere) of the ability to control blood vessel diameter. That is what I have thought ever since I was told about the cube-law relationship between the diameter of a tube and its resistance to liquid flow. That was a big realization for me. The reason for fatigue, for me, must be related, like heat sensitivity, and muscle strength, to the very large and seemingly unacknowledged/unrecognized smooth muscle energy demand from the continuous adjustment of vessel diameter, in response to what must be a very high number of environmental factors (temperature, humidity, food supply, +,+,+...). It would consume both oxygen fuel and food fuel. The brain veins, however, are said to have no smooth muscle, so they don't need this energy. If they have no smooth muscle, they can neither contract or dilate.

It occurs to me that if the venous blood is low in oxygen and sugar, because it spends too long in the brain, maybe it's that much harder also, to get it back to its 'full' condition. If the glucose and oxygen levels do not go up enough in compensation, once blood has left the brain, perhaps the rest of the body will suffer as a result. Maybe the shortfall gets worse over time. Maybe the fatigue and heat sensitivity are due to this low-sugar, low oxygen state's effect on the energy available to the rest of the body. Plus the veins in the neck would be the hardest hit, since they do not supply fuel to any other organs, and the blood gets immediately recycled by the heart and lungs.

I wouldn't have a clue as to how to prove this thinking one way or the other.

Is the ability to contract blood vessel diameter part of the autonomic nervous system? Autonomic is most definitely affected in MS.

I was impressed with Dr. Zivadinov at ISNVD. He clearly has put much thought into CCSVI and I often found myself agreeing with his statements.

Cece wrote:Is the ability to contract blood vessel diameter part of the autonomic nervous system? Autonomic is most definitely affected in MS...

Yes I believe so. At least I would expect it to be involved wherever temperature regulation is concerned. It is accurate to 4 digits, I think - we used to think our 4-digit voltmeters in the lab were a bit of an overkill. I don't think much conscious control is that fine. I also think that the bundle of vagus (autonomic) and other nerves that goes up the neck in a sheath with the carotid, and I also think, some veins, might be a good place for things to start going haywire. I dunno. I am squinting at blobs in the dark, though. Darker all the time, it seems.

Wish I had been in Orlando. I hear it's nice in SF too, most times of year, and there's a meeting coming up there, too. Not for us nematoads, tho.

If drsclafani has another patient day at his symposium, would you be in attendance? I would love to make it though I don't know how practical that is. Would love to attend the doctor days . Was sad to see that isnvd next year is in poland, having missed chance to attend in the more easily accessed (for me) orlando. SF must be the Hubbard's conference. Doctors only?