Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Lyon
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Post by Lyon » 10 years ago

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Last edited by Lyon 7 years ago, edited 1 time in total.

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cheerleader
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Post by cheerleader » 10 years ago

Maybe if neuros took the time they spent meeting and being entertained by drug companies, and instead went on the internet and read the most recent PubMed and medical journal articles on Multiple Sclerosis, they might understand.

They do not even know what is going on in the world of doppler technology and 7Tesla MRI. It is up to us. These are not wacky internet theories. This is scientific research...we just care more because our lives and the lives of our loved ones depends on it. And no drug company has asked for our endorsements!
AC
Go Marie!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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mrhodes40
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Post by mrhodes40 » 10 years ago

They do not even know what is going on in the world of doppler technology and 7Tesla MRI
One of the bigest issues in the medical world is increasing specialization so that a doctor from one field does not have enough background to understand what is going on in another. They simply refer.

One of the biggest hurdles this has is it is from another field

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robbie
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Post by robbie » 10 years ago

because nothing else works
what about all the crab's it's a shame for all the folks on them
Had ms for 24 years now.

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Hub
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Post by Hub » 10 years ago

I'm a big fan of Dr. Terry Wahls. For those of you who haven't gone to her website (www.terrywahls.com), I highly recommend checking it out. She has SPMS, was generally wheelchair/scooter-bound after doing CRABs, Cellcept, etc., and then came upon a new program to heal herself that seems to be working.

She strongly believes that dysfunction in the mitochondrial respiratory chain is central to the development of disability in MS, and has developed a program to improve mitochondrial function.

The reason I'm posting this in the venous insufficiency thread is that I just ran across an abstract that emphasizes the importance of the mitochondrial respiratory chain in the development of chronic venous insufficiency in the legs.

I think this is a fascinating angle to pursue....
Document title
Endothelium and venotropic drugs in chronic venous insufficiency: A review
Author(s)
MICHIELS C. ; REMADE J. ; BOUAZIZ N. ;
Abstract
Objective: To review the literature concerning chronic venous disease of the leg and the mechanisms of action of venotropic drugs. Methods: The authors identified relevant papers from their own collection and from medical literature databases. Synthesis: Endothelial cell activation caused by exposure to the hypoxic conditions that develop during blood stasis in chronic venous insufficiency patients is proposed to be one factor initiating a pro-inflammatory process in the leg veins. Recruited and activated neutrophils would then be responsible for alterations of the venous wall, typical of what is observed in varicose veins. Venotropic drugs used in the treatment of chronic venous insufficiency patients have long been known to decrease vascular permeability and increase venous tone. Recently, it has been shown that they are also able to prevent endothelial cell activation by hypoxia and a precise biochemical target common to all of them has been identified: the mitochondrial respiratory chain. Conclusion: The influence of venotropic drugs on the mitochondrial respiratory chain provides a rational explanation for the therapeutic benefit to patients of this class of drugs.
Journal Title
Phlebology ISSN 0268-3555
Source
2002, vol. 17, no3-4, pp. 145-150 [6 page(s) (article)]

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mrhodes40
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Post by mrhodes40 » 10 years ago

PK said
Is this doctor doing any kind of trials? The information is so vauge. If this was the US, we could contact the hospital or university to get more information on any research and trials. I see a lot of talk here but not much outside this website. No wonder my neuro pretty much just threw the papers I gave him in the trash. there has to be more to this.
This thread is huge so rather than say read it all I will tell you that:
Dr Z is doing trials, he is currently doing endovascular surgery to release the strictures in a very few select patients to see IF.....IF.....that helps the course of MS in those people. 4 people from the US are part of the trial out of a hospital in Buffalo. One of them posted on this thread......can't remember his name?

We'll hear more in a few months; Dr Z is going to report his preliminary findings in April on that trial so there should be a paper available after that. I am certain to make that purchase.

I would not make treatment decisions based on anything I read on TIMS, but I'd use that information to have a conversation with my doctor about what it might mean for me.

This work is preliminary and unfinished. It may not help to do surgery as Z is doing, so I would not stop my current plans.

It also may turn out that the best treatment for MS includes suppressives and endovascular surgery.

Remember that long list of inflammatory markers in the MS lesion and in the venous ulcer; perhaps those things NEED to be dampened by something like SCT.......along WITH releasing the vein. Maybe everyone will do revimmune and also see a vascular guy. Perhaps people who had really effective suppression will do the best of all.

No one can say at this point, I'm not a doctor and I sure do want you to talk to your personal doctor, NOT get overly concerned about this as if you have to somehow get on it now; it is not available so we can't! :wink:

But if it works it'll be around hopefuly sooner than later!

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mrhodes40
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Post by mrhodes40 » 10 years ago

Hub it looks good I am sure Cheer will be along to add more.......Have you seen the endothellial thread in regimens forum?

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Hub
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Post by Hub » 10 years ago

mrhodes40 wrote:Hub it looks good I am sure Cheer will be along to add more.......Have you seen the endothellial thread in regimens forum?
Marie - I have seen that thread, thanks. It's a great thread, just like this one. And maybe I should post the info below in that thread, but I'm lazy....

In addition to the abstract that I quoted above, I also want to point out a recent article discussing using glutathione levels as a marker for mitochondrial function.

If, as Dr. Wahls and some researchers suspect, mitchondrial dysfunction is a central feature of MS, then glutathione testing could be extremely helpful in evaluating MS progression (or more optimistically, the healing process).

Cheer -- the article focuses on a breakthrough that occurred at Stanford. Since you're going there in March, I thought you might be interested (if you're persuaded by the line of thought that emphasizes mitochondrial function in MS).

Here's the link:
<shortened url>

I also want to quote a part of the article that's probably hyperbolic, but eye-opening nevertheless:
And glutathione measurements could help scientists unravel other disease mysteries, too. 'You name the disease, you can postulate mitochondrial involvement,' Enns said. 'It's been proposed for everything from poor vision to hearing loss, kidney disease, liver disease, autism spectrum disorders, diabetes, Alzheimer disease, cancers. Our work could lead to research on therapies for a broad range of disorders.'

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cheerleader
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Post by cheerleader » 10 years ago

Hub wrote:.
Cheer -- the article focuses on a breakthrough that occurred at Stanford. Since you're going there in March, I thought you might be interested (if you're persuaded by the line of thought that emphasizes mitochondrial function in MS).

Here's the link:
<shortened url>
Thanks, Hub! Interesting stuff. Looks like the mitochondria are the power source for cells, and that they are part of the endothelium. (Boy, do I wish I'd paid more attention in biology!) My research has focused on the endothelium, because that is the lining of the blood vessels, and I've followed the vascular route- including reducing hypercoagulation & inflammation, and hypertension.

Mitochondria are present in every cell of the body except the red blood cells...which is where the 2 theories might split. Mitochondrial disease would certainly explain the fatigue common to MS patients, since it creates a deficit of energy available to the cells. But I have a hard time understanding how mitochondrial disease would create the activation of the immune system we see in MS, when MD is more a disease of "shutting down" of energy and white blood cells. One interesting corrolary is that nitric oxide balance is important to the mitochondria and endothelium.

Looks like mitochondrial disease can be spotted by checking glutathione and antioxidant levels in the blood. In my way of thinking, mitochondrial disease is another way of labeling oxidative stress, which is a huge component in all disease.
Recently, it has been shown that they are also able to prevent endothelial cell activation by hypoxia and a precise biochemical target common to all of them has been identified: the mitochondrial respiratory chain. Conclusion: The influence of venotropic drugs on the mitochondrial respiratory chain provides a rational explanation for the therapeutic benefit to patients of this class of drugs.
This is from the study you posted on the varicose vein treatment...the drug works by stopping oxygen to the endothelial cells and halting venous damage via the mitochondrial respiratory chain. Have to take their word for it!

The treatment protocol for MD doesn't offer much hope...although it's a great program, once again "there is no cure." I'm holding out for something with a cure!
There are no cures for mitochondrial diseases, but treatment can help reduce symptoms, or delay or prevent the progression of the disease.
Treatment is individualized for each patient, as doctors specializing in metabolic diseases have found that every child and adult is "biochemically different." That means that no two people will respond to a particular treatment in a specific way, even if they have the same disease.
Certain vitamin and enzyme therapies, along with occupational and physical therapy, might be helpful for some patients.
Vitamins and supplements prescribed might include:
Coenzyme Q10
B complex vitamins: thiamine (B 1), riboflavin (B 2), niacin (B 3), B 6, folate, B 12, biotin, pantothenic acid
Vitamin E, lipoic acid, selenium, and other antioxidants
L-carnitine (Carnitor ®)
Intercurrent illness supplement: vitamin C, biotin
Other treatments that might be prescribed include:
Diet therapy, as prescribed by your doctor along with a registered dietitian, might be recommended.
Antioxidant treatments as protective substances are currently being investigated as another potential treatment method.
link

Gotta love the development of molecular medicine...will keep my eye on this research. Thanks, Hub!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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mrhodes40
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Post by mrhodes40 » 10 years ago

Chlamydia pneumoniae, which has been found in many people with MS brains in many different universities also steals mitochondrial energy, becasue it is an obligate intracellular pathogen. Once it gets in the cell it takes over the mitochondria for its own purposes ie to metabolize, feed etc. It is one of the main circumstantial supports for CPn association with MS in that lack of energy is an important feature and this could account for that.

David Wheldon long ago, roughly '04, outlined a comprehensive list of supplements for MSers that includes several mitochondrial supports like N acetyl cysteine (turns to GSH in the body), AlCAR, which supports mitochondria directly and Coq10.

There is an immense amount of overlap in these varying strategies for supporting the MS body.......in spite of vary different theories as to "why" they work :lol:

We cannot tell cause by effect........ :wink:
Enough on that off topic cmment! see abx for information on that line of thinking if it interests.

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Hub
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Post by Hub » 10 years ago

cheerleader wrote:
Recently, it has been shown that they are also able to prevent endothelial cell activation by hypoxia and a precise biochemical target common to all of them has been identified: the mitochondrial respiratory chain. Conclusion: The influence of venotropic drugs on the mitochondrial respiratory chain provides a rational explanation for the therapeutic benefit to patients of this class of drugs.
This is from the study you posted on the varicose vein treatment...the drug works by stopping oxygen to the endothelial cells and halting venous damage via the mitochondrial respiratory chain. Have to take their word for it!
Cheer,

First, I want to thank you for the hope you've added to my life with the research you've cited and the analysis you've provided since you've been posting here!

However, I do have a quibble with your comment above. I think that the abstract is saying that when there's hypoxia (not caused by the venotropic drugs), the venotropic drugs prevent endothelial cell activitation, not that the venotropic drugs create the hypoxia.

As for mitochondrial disease being incurable (so far), my understanding is that that's because the MD is caused by a genetic mutation within the mitochondria. So far, no mitochondrial genetic mutation has been definitively found for MS, so maybe there's something else creating the mitochondrial dysfunction in MS that's easier to cure? Marie's theory, for example, explains mitochondrial dysfunction in the absence of mitochondrial genetic mutation, and includes a cure.

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cheerleader
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Post by cheerleader » 10 years ago

Thanks, Hub...yikes...you're right. Your explanation certainly makes more sense than my misreading of the abstract...hypoxia created the endothelial cell activation, the drugs stopped both via mitochondrial respiratory chain. That's what I get for going too fast :) Hope I didn't come off as dismissive, because there's alot here, and I probably should have studied more before responding.

Also right re: genetic mutations...and that future research could very well find a direct link to MS. And Marie is great to point out the overlap of cpn and MD. Keep it coming!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com


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