CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI and CCVBP

Postby NZer1 » Fri Feb 15, 2013 1:09 am

This is getting more complex the more I learn.
The complications mount with the more I learn, my mind ponders the every day Health challenges from common cold to altitude and the picture gets my juices going! ;)

:),
Nigel
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Re: CCSVI and CCVBP

Postby Sharon » Sat Feb 16, 2013 3:48 pm

Dr. Scott Rosa to speak at CCSVI Alliance's educational symposia at the Society of Interventional Radiology Conference in New Orleans - April 16, 2013. Please post link on your FB pages. Hope to see you there!

http://www.facebook.com/pages/CCSVI-All ... 6027456096
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Feb 17, 2013 4:42 pm

Abstract
This review traces the development of our understanding of the anatomy and physiological properties of the two systems responsible for the drainage of cerebrospinal fluid (CSF) into the systemic circulation. The roles of the cranial and spinal arachnoid villi (AV) and the lymphatic outflow systems are evaluated as to the dominance of one over the other in various species and degree of animal maturation. The functional capabilities of the total CSF drainage system are presented, with evidence that the duality of the system is supported by the changes in fluid outflow dynamics in human and sub-human primates in hydrocephalus. The review also reconciles the relative importance and alterations of each of the outflow systems in a variety of clinical pathological conditions.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904716/
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Re: CCSVI and CCVBP

Postby costumenastional » Mon Feb 18, 2013 2:22 am

Hello again. Seems that I ll never leave this thread once and for all...
My mother has just been diagnosed with MS. They just gave us the notice from the hospital since her results came out.
She has been troubled by leg symptoms for the last year or so and her latest cervical spine MRI showed multiple lesions. NMO test came out negative and we ve been waiting for the spinal tap and blood results which apparently are positive. I didn't have the chance to talk to a doctor just yet, my sis did and the feedback was MS candidate.
The rest of her MRIs are clean.
So, I guess we are a family with problematic cervical spines or something among these lines.
I ll keep you posted once know more.
What kind of MS is that I wonder...again.
Love to all of you.
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Re: CCSVI and CCVBP

Postby HappyPoet » Mon Feb 18, 2013 9:36 am

Hello Costume!!! :)

So glad you stopped by but am so sorry about your mother's diagnosis. She's lucky to have you and will benefit greatly from all your knowledge and experience. There are many reasons for her (and for all of us) to be hopeful... stem cell therapies, gene therapies, CCSVI studies, AO chiro and CSF studies with upright MRI, and more. Has she had full spinal X-rays yet? AO X-rays? In the supine position, is one of her legs shorter than the other? Are you satisfied she had a complete differential diagnosis? What type of lesions showed on her cervical MRI? T1 hypointense and/or T2 hyperintense? Inflammatory only? Or with demyelination? Oh dear, sorry for all the questions.
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Re: CCSVI and CCVBP

Postby blossom » Mon Feb 18, 2013 10:34 am

hi costume, always glad to hear from you. you were the trailblazer that guided us to dr. flanagan. always glad for that.

so sorry to hear about your mom. as she held your hand and guided you through life you will hold her hand and help and guide her through this. you know the do's and don'ts.

take care and keep us posted.
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Re: CCSVI and CCVBP

Postby costumenastional » Mon Feb 18, 2013 12:17 pm

Hello my wonderful friends. HappyPoet, all I know is that her lesions were non inflammatory and a-typical (whatever that means). All in her cervical spinal cord. I ll know more in ten days or so.
Blossom, you are so right...
I also happen to know one more thing: I still hate neuros. It's like watching the same old shitty movie one more time. Freaking weirdos..
Talk soon. Love!
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Feb 18, 2013 12:22 pm

Hi Costume,
Good to hear from you, and sad to hear of your Mum's dx.
Lots going through your mind no doubt. In time it will become clearer to you what the steps will be to beat this!

Take care,
Nigel

An after thought, I would concider having bloods done for CPn and Lyme and also consider that the tests are only 40-60% trustworthy.
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Re: CCSVI and CCVBP

Postby costumenastional » Mon Feb 18, 2013 12:54 pm

Will do man. Small steps for starters. Glad to hear from you too. It's nice to see the old gang full of energy. I love you all.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Feb 18, 2013 3:18 pm

Hello CN,
As I discussed with you previously regarding your mother's condition, she needs to be checked for a condition called subacute combined degeneration of the cord . SCD is related to anemia. A Schilling test should be done to check for vitamin B12 utilization.

http://en.wikipedia.org/wiki/Subacute_combined_degeneration_of_spinal_cord
http://www.ajronline.org/content/174/3/863.long
http://en.wikipedia.org/wiki/Schilling_test

Based on the limited x-rays I saw, your mother doesn't appear to have significant spondylosis but it would be helpful to see the scans or the radiologist's report.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Feb 18, 2013 3:41 pm

The comment below is from the Muscular Dystrophy Associations website regarding polymyositis. Polymyosits is an autoimmune-inflammatory disorder with close connections to rheumatoid arthritis. Among other things, it mentions carticaine (articaine) as a trigger. Articaine (Septocaine) is a local dental anesthetic. It was the major trigger in my case. There was very little information when I started looking into it. I will have to check the MDA's source. I cover anesthetics such as articaine in my book on autoimmune-inflammatory conditions.

In most cases, the cause of an inflammatory myopathy like polymyositis (PM) is unclear. For some reason, the body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune process.

Viruses might be a trigger for autoimmune myositis. People with the HIV virus, which causes AIDS, can develop a myositis, as can people with a virus called HTLV-1. Some myositis cases have followed infection with the Coxsackie B virus.

There are reports of myositis following exposure to certain drugs. Among the drugs that have been suspected of contributing to myositis are carticaine (a local anesthetic), penicillamine (a drug used to lower copper levels in the body), interferon-alpha (mostly used to treat cancer and hepatitis), cimetidine (used to treat ulcers), carbimazole (to treat thyroid disease), phenytoin (used to treat seizures) and growth hormone. The vaccine for hepatitis B also has been implicated in some cases.

Recent research suggests that the mixing of blood cells of a mother and a fetus during pregnancy could lead to the later development of an autoimmune disease such as myositis in the mother or the child.

Although inflammatory myopathies like PM aren’t genetic, there may be genetic factors that make it more or less likely that an inflammatory myopathy will develop.
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Re: CCSVI and CCVBP

Postby NZer1 » Mon Feb 18, 2013 4:57 pm

Thanks Dr,
had a bit of a read up on polymyositis, another 'auto-immune disease' or should I say a disease that isn't understood yet.
Interesting links to Lyme disease and that will mean CPn as well as I thought!

Seems there are many diseases that are thought to be virus or bacterial linked but the tests are not up to the task 'yet'.

:)
Nigel

From back in 1999 when CPn was first linked to many diseases of 'auto-immune' origin, time has supported this finding and there are hundreds of links where 'auto-immune is found to be incorrect as a dx'.
For those with what I now call 'Bacterial MS' since being on the Wheldon/Paul Paul Thibault protocol and experiencing positive changes in my MS, this article brings more awareness to the way the infection spreads in ones system.
"If you have inflammation, a spider bite, a viral joint infection, viral meningitis or encephalitis, it doesn't matter what it is, if a Chlamydia-infected cells happens to end up in that inflamed area, you may have just started yourself a Chlamydia farm."

RA is also a co-disease for CPn sufferers.

http://www.mc.vanderbilt.edu/reporter/index.html?ID=779
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Re: CCSVI and CCVBP

Postby costumenastional » Mon Feb 18, 2013 5:06 pm

Doctor Flanagan, I should remind you that Dr Michael Koontz has already found some minor damage in my mother's A2 but it was your opinion that it could not trigger such symptoms. A neurosurgeon who also show the images told me the same. We ll have to check with the former for a report and by that I mean Dr Koontz .
Myositis on the other hand, rings some bells. Does it hit the cervical spine only or what?
I don't have a clue about my mother's results. I don't even know what tests they gave her. I can only presume that she has oligoclonal bands. Along with the MRI findings, they are always ready to serve you a nice, welcoming MS diagnosis, even by phone. I know first hand so...we ll have to wait a bit more so I can get my hands on those results. That way we can schedule the tests that may help for real.
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Re: CCSVI and CCVBP

Postby uprightdoc » Tue Feb 19, 2013 2:39 am

CN,
The images I saw by Dr. Koontz were inadequate for ruling out spondylosis in the lower cervical spine. It would be helpful to see the cervical scans or radiologist's report.

Your mother doesn't have polymyositis. I posted the article in response to previous comments regarding triggers for autoimmune-inflammatory conditions. I was surprised to find articaine mentioned as a trigger on the muscular dystrophy website. The information is hard to find. In contrast to most dental anesthetics that are metabolized in the liver, articaine is metabolized in the plasma by plasma esterase similar to cocaine. Plasma esterase is related to the complement immune system. A large portion of the population in general, but especially people with RA and other autoimmune-inflammatory conditions are often deficient in plasma esterase. Cocaine abuse has been associated with autoimmune-inflammatory connective tissue disorders in susceptible individuals with deficient plasma esterase. Articaine can likewise trigger autoimmune-inflammatory conditions in susceptible people especially those with genetic tendencies.
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Re: CCSVI and CCVBP

Postby costumenastional » Tue Feb 19, 2013 3:11 am

ok doctor. I ll ask dr Koontz to extract more images as soon as possible. Any kind of specific request? He may have a lot of data in his hard disk and from what I know he can extract images upon request. He uses a special software of some kind to do it by manipulating stored data from a latest techology catscan machine.
I dont remember anything about spondylosis though from the MRI report. Only some kind of degeneretaion of the cord. I m anxious to get all the results from the hospital so we can plan our next moves.
Thank you in advance...
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