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Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:21 pm
by drsclafani
David1949 wrote:I had an MRI of the spine recently that revealed 4 small MS plaques on the cervical spinal cord. Are MS lesions on the spinal cord associated with CCSVI? If so would it be the azygous vein that's involved? Maybe you've discussed this before but I don't remember.
spinal lesions are associated with shear stresses on the spinal cord. They are not the same as the lesions in the brain, according to dr Schelling, whom I must say is a most brilliant and wonderful man. We do not speak enough about him and his ideas here and elsewhere. This is not the post to do so,, but i am trying to collect my thoughts about h is ideas of spinal lesions. They are different but are associated with ccsvi. The entire spinal cord has an interconnected venous circuit. from vertebral veins to azygous to ascending lumbar to left kidney

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:25 pm
by drsclafani
Cece wrote:Four new spinal lesions, David? Are you doing ok?
Here's an old answer from Dr. Sclafani http://www.thisisms.com/forum/chronic-c ... ml#p124450
cece, I am entitled to change my explanation of venous problems as i learn them . I am in the process of revising my understanding spinal lesions as i write you.
DrSchelling has sort of flipped my thinking on so many things this week. Lots of late night over beer with him as i soaked all the ideas he offered

s

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:30 pm
by drsclafani
David1949 wrote:
Cece wrote:Four new spinal lesions, David? Are you doing ok?
Here's an old answer from Dr. Sclafani http://www.thisisms.com/forum/chronic-c ... ml#p124450

Cece thanks for the info. What I'm wondering is if ballooning the azygous can help with MS in the spine.

I don't know if the lesions are new because this is the first time I've had an MRI of the cervical spine. They could have been there for a long time or they could be new.

Yeah I'm OK. Don't worry about me. I believe in the old adage "count your blessings" and I've had many of them, including nice friends like you. No complaints from me, but it would be nice if I could get my gimpy leg working again. :-)
David, spinal lesions can be associated with jugular, azygous, renal and ascending lumbar veins or a combination of any of them. I do not think it is as neat as azygous problems cause spinal lesions

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:32 pm
by drsclafani
PointsNorth wrote:I'd like to learn more about this LVD stuff. I've got mobility/bladder/bowel issues but both of my procedures revealed no stenoses in the azygous (2nd procedure w. IVUS). I wonder how common this is? I know I have a few spinal lesions. Maybe more than a few now.

Altho Dr.S might object, I think it's time for an acronym? Or something sexy like 'Luxvicadra'. Sounds like a new drug?

PN
am i going insane? LVD means ???

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:33 pm
by drsclafani
Cece wrote:LVD = luxuriant vicarious drainage?

Where is Dr. Sclafani? I am waiting to hear his take on ISNVD!

I am here. ask away

for me the most special moments were with dr schelling

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:34 pm
by NZer1
Over the last period of time I have notice a trend in the threads all around the Net. And my personal experience has shown me I have a virus infection possibly Chlamydophila pneumoniae which IMO can only cross the BBB if there is a breach from something like reflux or back flow that allows opportunist viruses across the BBB to effect and infect the tissue inside the BBB which is not experienced or understood 'as yet'.
I have placed the comment below on my FB page with the hope it will generate thinking and comment on this possibility.
https://www.facebook.com/pages/CCSVI-in ... 84?sk=wall

"What if the delay in returning blood to the heart from the brain causes reflux and that in turn causes back pressure at a specific venial size. And that same vein size is developing lesions known to be related to the 'MS' disease label.
The infection of a virus like Chlamydophila pneumoniae (CPn) can enter the CSF through this action and infect the brain, from the outside in, grey matter first, then white matter second.
The signs of CPn infection are evident in the same sizes veins.
The veins treated in PTA may also not heal from PTA if there is infection from CPn and repeated PTA may not be 'curing' reflux problems because of vein health, and possibly worsen the situation.
The symptoms of this virus once it enters the brain are the same as MS symptoms and the CCSVI symptoms as well.
Without the reflux the problem a CPn infection may not be an issue to the 'normal' population as the CPn will not cross the BBB on its own.

This thought has been generated from my own experience and from the work of Paul Thibault (from Australia) and David Wheldon's work on CPn and MS causation.

http://www.davidwheldon.co.uk/ms-treatment1.html "

Please have an open minded look at the work of David Wheldon and soon there will be papers from Paul Thibault on this situation.

Re: Re:

Posted: Fri Feb 24, 2012 10:37 pm
by drsclafani
Cece wrote:
drsclafani wrote: As I have modified my venogram of the dural sinuses, I have noted very prominent emissary veins and these veins provide large conduits increase flow through the spinal veins. I am unclear if there is an association between this emissary vein and symptoms, though.

(I actually emailed dr zamboni about this today!) Wonder what he thinks, although I dont think that dr galleoti routinely images the dural sinuses.
I wonder too! Might be ok if no azygous blockage but not good if there is azygous blockage because it adds to the flow there. Spinal veins also not meant to carry excess flow?
Franz schelling thinks that the emissary veins, especially the condylar veins are very important. They may actually be strong contributors to ccsvi by driving venous blood back into the the head from the neck

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:46 pm
by NZer1
Interesting reading your latest replies Sal.
Makes me think of a time a year or two ago when we first talked about the work of Micheal Flanagan about the spinal cord injury connection to MS.
Something has to be allowing a virus or some type of pathogen across the BBB due to injury or alignment issues, all that caused by back flow from the stenosis'.
I have the opinion after soaking up the info from so many sources that the reflux issues is the action, the cause that it creates or allows to happen, is another part of the picture.

Deep breathe and deep thoughts, good time to go bush and ponder?
Regards and thanks for you work,
Nigel

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 10:50 pm
by NZer1
The NAC Test

One indirect indicator of chronic infection with this organism is the N-acetyl cysteine test. This relies on the ability of NAC to rupture the extracellular Elementary Body by opening up surface disulphide bonds in the organism’s geodesic coat, as described above. The EB opens and perishes. The release of naked bacterial components causes local inflammatory symptoms. Because EBs are more numerous in primary respiratory infections, the acellular load of EBs is likely to be highest around respiratory structures. In a positive NAC test the daily administration of 2.4 G of NAC will cause, after a few days, sinusitis-like symptoms, with watery mucous; also a cough productive of a clear, moderately viscous sputum. Systemic symptoms — 'NAC flu' — may also occur. If symptoms are severe, the dose of NAC may be cut down to 600mg and slowly built up as may be tolerated. Symptoms wane, sometimes quickly, after a few days if the chlamydial load is small; if the load is large they may continue for a month or more as the EBs are destroyed and their remains removed by the immune system. As far as I am aware, NAC is unlikely to produce die-off reactions with any other genus.

From http://www.davidwheldon.co.uk/NAC.html

This test increased/exacerbated all of my 'MS' symptoms and a Flu like or Hangover feeling after four and a half days on 750 mg tabs x 2 twice a day. There fore 1500mg morning and night which was confirmed by Paul Thibault as "Nigel, you almost certainly have a chronic active Cpn infection and this may be the cause of the MS and CCSVI.
You should reduce the NAC to 600mg per day until you are tolerating it better, tehn slowlly increase the dose. You then need to start the CAP."

Food for thought? I haven't had a Doppler test yet as there are not trained people in NZ as yet, I may travel to find out more, but at this time I believe I need to get my vein health in order before PTA, IMO.
Nigel

Re: DrSclafani answers some questions

Posted: Fri Feb 24, 2012 11:17 pm
by pelopidas
drsclafani wrote:

12% use it regularly, 12% use it occasionally, about 50% dont have access to it;

other news, new IVUS unit will have 5 times the resolution, and be able to compete with optical computed tomography. resolution will be on order of 25 microns. a red blood cell is 6 microns!

those that use it think it is really valuable, that they cannot imagine doing the procedure without IVUS
We patients, on the other hand, we don't really care about time and cost. We only wish to imrove.

Here is the link to abstracts and consensus notes:
http://www.isnvd.org/index.php?site=concensus

the consensus notes is the beginning of a new era in the history of Medicine.
even the role of ccsvi in head creating a compartment syndrome!

Dr S, we are so proud of what you accomplished there
And i wish i had a beer on the table beside you and Dr Schelling.
Great work!

Re: DrSclafani answers some questions

Posted: Sat Feb 25, 2012 12:06 am
by Robnl
drsclafani wrote:
David1949 wrote:I had an MRI of the spine recently that revealed 4 small MS plaques on the cervical spinal cord. Are MS lesions on the spinal cord associated with CCSVI? If so would it be the azygous vein that's involved? Maybe you've discussed this before but I don't remember.
spinal lesions are associated with shear stresses on the spinal cord. They are not the same as the lesions in the brain, according to dr Schelling, whom I must say is a most brilliant and wonderful man. We do not speak enough about him and his ideas here and elsewhere. This is not the post to do so,, but i am trying to collect my thoughts about h is ideas of spinal lesions. They are different but are associated with ccsvi. The entire spinal cord has an interconnected venous circuit. from vertebral veins to azygous to ascending lumbar to left kidney
Hi Doc,

Spinal cord, renal, azygous, lumbar.......PPMS patients have spinal lesions....is the idea right that PPMS patients 'should have' narrowings in the mentioned veins??
For me (PPMS), i still feel much better after my treatment in Poland in March 2010 (LJ valve). But walking still got worse, some tremors, stiffness. Makes me wonder if these veins have narrowings (May 2011 my azygous was balllooned in Belgium)

And...is the vein 'list' complete?? Or do you think that more veins with correlation to ccsvi will be added i???

Rgds,

Robert

Re: DrSclafani answers some questions

Posted: Sat Feb 25, 2012 5:18 am
by Rosegirl
drsclafani wrote:
I found it interesting that some neurologists looked at cog fog and fatigue as signs of depression rather than actual symptoms

i learned that neurologists see patient symptoms are varying quite a bit, that symptoms can be there one day and gone the next, that symptoms can be different during morning and evening. I wished I had a year to do some learning of neurology
When I was diagnosed in 1989, my doctor asked me to keep a journal of my symptoms. He was surprised to see that it was so thorough, broken down by body part (left arm, right leg, etc.) and by symptom (stiffness, tingling, etc.). He had no explanation for why these symptoms changed in less than 20 minute intervals all day long.

In 2010, my neurologist (head of MS at a major university hospital) looked at the images from from my venogram and said that I didn't have MS ever. Unfortunately, the procedure did not relieve my symptoms.

Given that my symptoms also change based on position, I think that there is something somewhere that acts like a plug in a bathtub. It's usually blocking the drainage, but sometimes, it swings out of place and everything works perfectly - for the few seconds or minutes before it drops back into its former position.

Now if only there was a better way to find that pesky (but flexible) bit of tissue. I think the catheter used during the procedure just pushed it aside thereby making it "invisible".

Since the vast majority of doctors don't use IVUS, Dr. Sclafani, if you didn't have IVUS, what technique would you use to find such a movable target?

Re: DrSclafani answers some questions

Posted: Sat Feb 25, 2012 7:58 am
by Cece
drsclafani wrote:I found it interesting that some neurologists looked at cog fog and fatigue as signs of depression rather than actual symptoms
There is considerable crossover between the Beck Depression Inventory and the Fatigue Scale. If my memory serves, people with depression will score elevated on the fatigue scale but not as high as people with fatigue; and people with fatigue will score higher on the Beck inventory, but not as high as people with depression. Prior to provigil and amantadine, fatigue in MS was sometimes treated with antidepressants.

There is both situational and organic depression in people with MS. But there is also cognitive impairment and fatigue. It is unfortunate if cogfog and fatigue potentially caused by impaired blood flow were dismissed as psychological.

Relationship between depression, fatigue, subjective cognitive impairment, and objective neuropsychological functioning in patients with multiple sclerosis: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2933087/
Sleep disorders, anxiety and depression were linked with fatigue in a few patients: http://msj.sagepub.com/content/6/2/124.short
Fatigue not associated with inflammatory markers; fatigue equally found in benign MS compared to nonbenign; and fatigue lower in PPMS than RR or SP, possibly suggesting less CCSVI in PPMS if fatigue is a CCSVI symptom: http://www.neurology.org/content/57/4/676.abstract
This one supports the idea that depression leads to fatigue in MS: http://msj.sagepub.com/content/13/9/1161.abstract
Provigil does not work for MS fatigue: http://msj.sagepub.com/content/17/8/1002.abstract

Re: DrSclafani answers some questions

Posted: Sat Feb 25, 2012 8:06 am
by Cece
drsclafani wrote:Some learned and esteemed physicians do not even think it is an insufficiency
Hypertension instead of insufficiency?
Do you think it is an insufficiency?

Re: DrSclafani answers some questions

Posted: Sat Feb 25, 2012 8:09 am
by Cece
drsclafani wrote:other news, new IVUS unit will have 5 times the resolution, and be able to compete with optical computed tomography. resolution will be on order of 25 microns. a red blood cell is 6 microns!
Oh!! Is there any opportunity for you to get such a unit?