This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi kenneb9

An interesting blog to follow. I e-mailed Ginger the other day and we both celebrated the good news of receiving firm dates from Dr Simka for this March. We may well meet up then but at least I will be a bit more informed of her situation. I may even recognise her!

_________________
Nigel

Hi folks

Second post so I will quickly say hi and thanks to everyone who has gone before my wife and I. My wife has had MS for a few years. I am truly grateful for everyone's input in this list and of course to you folks who pushed so hard to go first. I feel like I know many of you - maybe one day I will. Cheer - I am a great fan of Monk and admired the music long before I knew about Jeff.

We are keen to have my wife tested for CCSVI here in Melbourne, particularly since we're probably travelling to Europe next year. I've read many people's issues about getting medicos to listen to us about CCSVI, so my plan is to try to do this get our GP to be a champion for our cause, rather than going directly to IRs or vascular surgeons - at least in the first attempt. I believe that if I can get a GP to champion our cause then the wheels of progress may turn a little easier. I think this will be a lot easier given the groundwork that's already been done.

What I think is missing is few pages describing the research in terms that the GP will understand - to demonstrate that there's 30 years of vascular research on MS, to show that Zamboni is a respected researcher, to show that the theory is scientific (ie testable) and to show that the results, while remarkable, have also been independently reproduced.

To this end I've been working a a "white paper" about CCSVI, specifically oriented towards my GP. My plan is to email this document - no more than about 3 pages - to our GP to try to hook her interest, and then go discuss it with her in person. The idea is that she can read this in 10 minutes and become convinced - rather than having to invest in reading the research up-front.

Does anyone here think this is NOT a good idea?

Much of what I have written is from memory so there are plenty of bits where I need help finding supporting documents (ie stuff I know is true but I can't remember where I heard it). If anyone's interested in helping then please PM me with your email address and I'll send you a link to it. If I get a good response then I'll make it available to anyone who wants it.

Thanks again to all,

Cheers
Mark

please could you tell me how I can get this treatment where do I go for the operation.
thanks

it seems that poland Katowice (Dr Simka) is the only place active right now in CCSVI operations. Others will do it soon but only on clinical trials.

This is definitely OT (well, this is general so maybe not) but I have been doing a lot of catching up and am curious if someone can post some information/the thread about comments made by the MS Society of Canada (Dr. Cossoy). Specifically, I am looking for a response to the statement that red blood cells aren't found in MS brains upon autopsy. Is that true?? I have tried a search and found the original discussion but this specific statement wasn't addressed in the thread so I'm a looking. Thank you!

Found my own answer:

In ordinary situations, let's say a red blood cell dies of old age, the iron is saved and reused on a new red blood cell. But iron in the form of hemosiderin is not bio available or useful anymore so it is chucked to the curb......... via the kidneys and urine.

Since hemosiderin is a form of iron seen when blood has gone where it does not belong and the immune system had to clean it up, that is a good support of what we are talking about with CCSVI.

Thanks, all!

Hi

Don't know if anyone is going to find this useful but I've posted a white paper I wrote about CCSVI, introducing it, refuting the autoimmune theory of MS, describing CCSVI and showing the depth of research behind it.

I have plagiarised unashamedly from TIMS and other comments I've seen, but I haven't been able to attribute everyone - I am very happy to include specific references to people's comments but please forgive me for not doing so as I was on a deadline to get it done before our appointment. Just PM me to get the correction made.

The idea is to introduce CCSVI to a GP who hasn't heard of it. It's not intended to be completely authoritative - I also took copies of some of the Zamboni work to ours. My approach is to try to refute the obvious objections first. No reasonable person can say "but it's autoimmune! everyone knows that!" when there is evidence in front of them that it isn't.

If anyone wants to download it please visit http://public.me.com/inomial

I'm very happy to receive comments and suggestions via PM.

Cheers & thanks to all
Mark

Here is an abstract from earlier this month that is interesting in regard to MS not being an autoimmune disorder. I obtained the full article but it was so detailed and technical that it was virtually unreadable to my untrained mind.

<shortened url>


You probably are well aware of this researach but this strongly supports my personal belief (for what little that is worth) that MS is not autoimmune. If it were, all the strong immune supression work would have had more effedt on MS. I have PPMS so the only thing of personal interest is slowing or stopping progession, and none of the current anti-inflamatory, immunosupression stuff does that.

I also don't thik EAE is a good model. If CCSVI proves correct (and I am very hopeful that it will), then building a good animal model to test treatments will be very easily done, and research in all aspects of this disease should finally really pick up speed.

Hi Mark, good idea, I have not read it yet and was thinking of writing one myself, if I thinks it meets our needs can I use it on ms-ccsvi-uk.org facebook page?

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Well done, taxi.

My inference is that we are free to download, and use the file (as is, and with credit to taxi Mark, of course). Disabuse me of that if otherwise. Thanks.

_________________
My name is not really Johnson. MSed up since 1993

Taxi

This is excellent...I was prepareing a packet of info for my wife's neuro to review and if you don't mind, I'd like to take this to him

As a side note,
This neuro is the head of the neuro dept in a well respected teaching hospital and had not heard of CCSVI until we called him this week. He is very open minded and asked us to put together the packet so he could research it before our next appointment. This just goes to show how much work there is still to do in getting the word out......

Great work Taxi! I hope you don't mind me passing this link to the Dutch MS/CCSVI forums? Very good read! Thank you.

_________________
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)

Hi folks

Thanks for your great comments!!

Please do reuse the document however you see fit, I've added a creative commons license (and my name!) to the PDF to make clear how I think it should be used. See http://creativecommons.org/licenses/by-nc/2.5/au/ for more information.

I will continue to update it with more information as I find it / have time. In particular on re-reading I think I discuss stenosis too much and not enough reflux. Anyone with comments let me know.

Thanks again to all at TIMS!

Cheers
Mark

Mark, it looks brilliant, well done. I'll be bringing it with my to my neuro at the end of the month.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Hi fogdweller,

Yes I cite the Pineas article in my paper along with an article refuting the EAE model. Check it out, there are lots of references and it's only a few pages long Let me know if you think I should add something.

cheers
Mark