CCSVI - Aussie Action!

[friday_fc]

If you are referring to the female neuro at the Brain and Mind Institute in Camperdown, and it is in fact my neuro, her name is Dr Spies (pronounced SPEES) and she is great and when I asked for LDN, no questions - just wrote a script (mind you, I'm sure other MSers paved the way for that to happen)

[avantitech]

....In that same clinic, there is a third Neurologist, a woman. I have never consulted her, however, she is the only one that has said "hello" to me while I wait to see Prof Pollard. I also saw her go to the chair of her next patient and greet him and help him to her consult room (he didn't really need the help). So she seems to be someone who "cares" or treats the patient a little differently to the others. She was also on the paper that Pollard and Barnette and prineas published earlier this year, questioning the Auto-immune pathology of MS......

Folks, another Aussie researcher using his considerable intellect to hunt down the origin of MS attacks!! There's this interesting excerpt from the MSRA progress report by Prof.John Prineas in his funded study http://www.msaustralia.org.au/msra/research/Prineas.php
...... further proof that a particular lymphocyte primarily implicated in MS plaque formation is in fact primarily targeting "astrocytes" the repairing brain cells structurally supporting the vein network of the brain:

'INFLAMMATORY CELLS IN THE BRAIN AND SPINAL CORD IN MULTIPLE SCLEROSIS. WHAT ARE THEY TARGETING?
Prof Prineas has identified a particularly dangerous type of invading white blood cell in MS tissue, a cell referred to as a cytotoxic CD8 T cell. Prof Prineas has discovered that these cells appear not to be directly targeting myelin or the cells that make myelin but another cell, a cell located in damaged tissue undergoing repair.

Furthermore Prof Prineas reports that the unidentified target of cytotoxic T cells in MS may be cells normally associated with blood vessels in the brain and spinal cord, cells known as astrocytes. If further work shows this to be true, the observation will have an important influence on future research into the cause of MS."

Therefore the 'Myelin attack" theory often quoted by MS associations, dictionaries ad nauseam describing MS to lay people and taught to medical students & neurologists is IN FACT ---WRONG and is in need of revision.....eventually...say 2020?

Come on medicos and support staff who may be reading this thread...make 2010 ... THE year!!!

[CureOrBust]

Prineas was on the same paper that the other neuros in this office were on. I think another member of this forum emailed either Barnet or Prineas about a year ago, and was basically informed that they were not that impressed with the CCSVI theory.

[hwebb]

Thisis a duplicate of a message of put in the discussion for Melbourne CCSVI. Sorry if you already read it there.
-------------------

OK,

I saw Dr Julie Gregg in Melbourne this morning for Doppler Ultrasound of my neck veins (jugular and vertebral). She could clearly detect low blood flow in my left juguar vein...which was no surprise to me as i have a pronounced feeling of discomfort in this place.

Anyone else who wants to visit Dr Gregg, please make sure the referral states DOPPLER ultrasound...so she can allocate enough time for the appointment (regular ultrasound is a faster process).

$225 for analysis..and received $144.10 back on medicare. Was happy to know this new information about my health - at any price! I'll probably be getting an MRV soon to show more detail of my left jugular.

best regards, hwebb

[loulou]

H Webb

JUst wondering who gave you the referral to Dr Gregg.
Was it your GP or neuro ?And what was the reason written on the referral ?
Thanks
lou lou -adelaide

[elaine]

this is probably a dumb question, but after we get the droppler ultra sound done here in Melbourne then what do we do?

[Downunder]

Hi Everyone,

I have just found this site today after weeks and weeks of reading about CCSVI.

I'm in Phil's camp, give it a try!!

Well to that end I have been told by my neorologist here in Melbourne, that my scheduled MRI on Jan 8th will become an MRV.

My questions are;
How conclusive is the MRV as opposed to the Doppler?
And will 'gadolinium' used as the 'dye' for the MRI be the best 'dye' for my veins?

Sorry if this has been discussed before, but I've not yet found the answer!!

Wishing all a Great Christmas and beyond that, a very Hopeful New Year.

[Moggy]

At this point in time, neurologists in Oz don't appear interested. My sister also has MS and it seems both our GP's are more excited about the prospect of Dr Zamboni's procedure than the specialists. Both our GP's are now in contact with each other and a vascular surgeon, all of whom will attempt to learn the correct ultra-sound procedure. So, like everyone says, I guess it is up to us, the sufferers, to push for more action.

And Phil, thank you for being the pioneer, whether good or bad results, we must all hope that we can see a light.

[Johnson]

And will 'gadolinium' used as the 'dye' for the MRI be the best 'dye' for my veins?

Hi downunder,

Gadolinium seems to be the agent in favour. You ought to read up on it, so that you can make a clearly informed choice.

If you have it, be sure to drink a good dose of water before the scan (and pray you don't have to pee for the next hour, or so), and drink massive amounts of water afterward - to flush it through the kidneys.

It has a short half-life in the body - about 4 hours, and most of it is gone in 24 hours.

There are contra-indications to its use, such as kidney, and other, serious troubles, and it can cause a potentially fatal problem:

The disease linked to gadolinium-containing contrast agents is called Nephrogenic Systemic Fibrosis/Nephrogenic Fibrosing Dermopathy (NSF/NFD).

http://www.hc-sc.gc.ca/ahc-asc/media/ad ... 24-eng.php

The Health Canada advisory reports 109 cases (out of many thousands of uses), none of which were in Canada. I have gadolinium a few times, but last time, it did put a noticeable strain on my kidneys (edit - I was not as attentive to my water intake on that one. /edit). Over-all, it seems fairly benign, and the imaging results can be much better.

Google is your friend. PubMed, NIH, etc.

[jess]

ha johnson can u change your picture of a head coming out of a box im already freaked out with this ms stuff

[Downunder]

Thanks Johnson for the information, especially about drinking lots of water!! I have a terrible time with incontinence, so it should be fun (not!!).

I'm just hanging out for a possitive outcome from my MRV.

Downunder

[effi]

Hi Guys,
does anybody know if the test can be done in sydney

[CureOrBust]

I'm just hanging out for a possitive outcome from my MRV.

What are you getting done as part of your MRV? Is it of the head only? or from your diaphragm up to the top of your head? Is it by any chance on a siemens machine?

Good luck!

[Downunder]

Sorry Cure,
I can't answer any of those questions yet.

I will have a lot of questions to ask when I get there!

I was to have an MRI as part of a study my neuro is part of. I had only just started reading about CCSVI when it was arranged. At my appointment he mentioned he was keeping a close eye on what was happening in CCSVI before I had said a word, so when I'd done a lot more reading I asked him if we could add an MRV to the original request.

That was done and now after more reading I have asked for the azygos to be included. I've not heard back yet, so not sure if this will be done. As I have PPMS I know it has to be checked.

Regards DU

[Johnson]

And will 'gadolinium' used as the 'dye' for the MRI be the best 'dye' for my veins?

Hi Downunder,

Gadolinium seems to be the agent in favour. You ought to read up on it, so that you can make a clearly informed choice.

If you have it, be sure to drink a good dose of water before the scan (and pray you don't have to pee for the next hour, or so), and drink massive amounts of water afterward - to flush it through the kidneys.

It has a short half-life in the body - about 4 hours, and most of it is gone in 24 hours. edit - see below

(redacted)

edit - Hi Downunder,

After reading this fellow's remarkable story about chelation, and its role in his "cure" for MS, I am rethinking what I wrote about the gadolinium being purged in a short time. http://www.matteodallosso.org/eng/
He writes that some time after having an MRI with gadolinium, he had a chelation session, in which massive amounts of gad. were removed - 3200 x the reference (safe) level. If you scroll half way down this page - http://www.matteodallosso.org/download/ ... nation.pdf you can see the urinalysis results from Genova labs in the US.

Note that I am not recommending anything, in any way - that is your call, but I would consider on how to get the "vestiges" out afterward. That can't be good for the old brain, or liver, or...

In my reflections, the last (3d time) I had gadolinium, it seemed to be a set-back for me, that was subtle, but still there. My understanding is that its only real purpose is to see what lesions are active. If I am just looking for stenosis, I don't care about active lesions being imaged - I know they are there! Unless it is necessary to see the stenosis, I won't have it again.