CCSVI concerns

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

In support of constructive debate

Postby Ruthless67 » Wed Mar 10, 2010 10:36 am

Hi All and JustJazz,

JustJazz, please continue to read and post here on Tims, all views and ideas are welcome and batting, not battling, ideas & opinions around is a good thing, I think. I’m often drawn into the conversations myself from an emotional point such as this. But there is a WEALTH of information at Tims over and beyond CCSVI.

I was on Avonex until my liver functions started coming back elevated, and my MS symptoms were still progressing. It was a concern for me and my GP, not so much for my Neurologist…. :? When I discovered the Candida albicans theory by Ann Boroch on-line a few years back, I was all over it, having been following a similar diet by Roy L. Swank. Later I found the CCSVI information here on Tims, so now I’m all over it!!

I wish I had answers to all my questions to my own satisfaction, but I don’t. So I still log on-line daily and do related searches for all things MS. Every little “scrap” I find interesting I search to the end, that’s how I stumbled into Tims in Sept. 09, while researching the Candida connection.

Many times the medical research papers I find are so far over my head, but I am still often able to somewhat understand the conclusions at the end of the papers. I was never comfortable with the idea that I needed to use drugs to “suppress and compromise my immune system” in order to fight the auto-immune attack in my body. I really felt and feel that there must be a “logical” reason for my body attacking it’s self.

I was intrigued by the idea of the excess iron in our brains caused by reflux (Dr. Zamboni‘s theory) or (back Jets as Dr. Schnelling calls them) could be the culprit. So now I’m going to follow this “scap” of info to the end and see where the research goes.

JustJazz, if you haven’t read Wheelchair Kamakazi’s blog, I would suggest it, it’s a really a good read and journey of self discovery that is still a work in progress. Here’s a quote from one of his latest posts.

Marc at www.wheelchairkamikaze.com

“In regards to "where I stand" on CCSVI, I try to take an open-minded and unemotional view of all MS research and treatments, because early on in my disease I learned that nothing is sure when it comes to MS. Becoming "emotionally attached" to a treatment only served to keep me from being able to assess things objectively. Of course, we all form our opinions, but I've had my hopes raised and dashed too many times to fall into that trap anymore.
I believe that CCSVI will prove to be a significant part of the picture for many patients, but that for others it will play no part in their disease process. I base this on the simple fact that I don't believe that MS is actually any one disease, but a collection of related conditions that share symptoms and some diagnostic criteria. Researchers doing postmortems on deceased patients have already identified at least four different types of MS lesions, each of which exhibits markedly different characteristics. Some show signs of immune activity, others indicators of infectious causes. It could be that one or two of these lesion types is caused by CCSVI, but I doubt that all could be attributed to this one cause.
I don't have time to wait to see whether research proves or disproves CCSVI. The anecdotal evidence, in addition to the preliminary buffalo results, convinced me that there's enough to this to warrant me giving it a go.”


As I type this Marc is currently having an angioplasty. I hold similar beliefs to his about Ms being a collection of related conditions that share similar symptoms. In my own personal journey for answers I will be in the Stanford CCSVI trials later this year. I hope I get more answers from the trials, but I don’t believe for one minute that it will answer all my questions or be a complete or definitive “cure” for my MS. Just a part of the puzzle that is Multiple Sclerosis.

Respectfully,
Lora
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Postby Lyon » Wed Mar 10, 2010 10:45 am

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Last edited by Lyon on Mon Nov 21, 2011 6:09 pm, edited 2 times in total.
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Postby Cece » Wed Mar 10, 2010 12:55 pm

I thought the OP started off with reasonable posts, expressing a POV of caution, but then it devolved...he posted twice, early on, about the arrogance here (personally I took offense after he took offense to Donnchadh...the only people I call bud are my two-year-old and four-year-old sons...sorry about my side of that)...I think the regulars here are smart and have pulled apart this theory to great detail...there is an expectation, if you're going to dip your toes in here, that you can talk about endothelial cells and Putnam and the definition of truncular and the Sardinian children and so on. I think that expectation, as much as anything, can drive a person off.

For myself the original topic here hit home because I am choosing the opposite from the original poster (seeking CCSVI treatment despite being early in the disease) and had recently read Marc's blog post that said, if he were early on, he'd wait...so in some ways I'm coming at it from a feeling that I have to defend my decision to seek treatment. But we all make our own decisions. I have "benign" m.s.; my EDSS has fluctuated between zero and .5 and is headed back down toward zero again; my neuro thinks, in regards to CCSVI, "Give it time." But I have the chronic fatigue, I don't feel well, and I've read that it's the people with the low EDSS who are experiencing the greatest improvements.

As for the paper I posted, the one I really was looking for was the one that says that, even in remission, m.s. damage is continuing...that the term remission is misleading, because it suggests an absence of disease process.
Last edited by Cece on Thu Mar 11, 2010 4:59 pm, edited 1 time in total.
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Postby Lyon » Wed Mar 10, 2010 1:37 pm

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Postby L » Thu Mar 11, 2010 6:38 am

Leon wrote:but attempting to demean and humiliate them isn't any better than the things people accuse me of.


I don't know whose been accusing you of what, I'm sure you;re innocent, whatever the charges might be, but demeaning and humiliating? I re-read the thread, and I couldn't see anything like that.
Last edited by L on Thu Mar 11, 2010 8:41 pm, edited 1 time in total.
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Postby PCakes » Thu Mar 11, 2010 3:19 pm

An open mind in open discussion is a very good thing..as a child and to this day healthy debate and banter were and are a side dish of every meal ..but.. the nagging question for me when i read posts in a thread titled 'Chronic Cerebrospinal Venous Insuffiency' by people so emotionally oposed to this research and therapy is... " why are you here?".. is it to save us?.. relieve stress?.. no matter to me as 'to each his own" .. I'm just curious??
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Postby Lyon » Thu Mar 11, 2010 4:31 pm

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Postby Cece » Thu Mar 11, 2010 5:08 pm

Lyon, except for when you go too far, this all seems reasonable and worthy. Except for when you go too far...which is worth saying twice, so I edited it in.

The mention of intelligence does seem like a potshot...I am personally impressed with the smarts concentrated here, yourself included. You realize that much of the internet, outside of here, is a morass of misspelled half-thoughts? ;)
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Postby justjazz » Thu Mar 11, 2010 11:01 pm

Lyon wrote:Because of the desire to wait for proof before becoming convinced of the merits of CCSVI, a person is assumed to be opposed to CCSVI. I've been dealing with that the entire time that CCSVI has been discussed on thisisms. No matter how many times you voice hope for the future of CCSVI it seems that if you express any reservations about the lack of current proof you are labeled as an "opponent".


Thank you for the support. I didn't want to be seen as the enemy here, but I now realize I may have stepped over the line, and I apologize to anyone who may have been offended. I guess over the years I've seen everything from bee stings to vitamin therapy and everything in between as a panacea to M.S. So I try not to get too excited with another "new" treatment with remarkable claims. I guess it boils down to whatever one is willing to try to help manage their life with M.S. I will read further on this procedure however and try to understand a little more.
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Postby hope410 » Fri Mar 12, 2010 12:40 am

I think we all do our own risk/benefit analysis when it comes to what we're willing to do in the name of addressing our disease, at what point we're willing to do it, and at what cost.

Some people here are willing to take far greater risks than I am in pursuing CCSVI even though their disease status is far more mild than my own. Who am I to judge them? All I can hope is that they are well informed when making their decision, and this place is very good at providing a full picture and all the information available. Whether someone chooses to deliberate over it all or turn a blind eye to that which is contrary to their intention, that is a personal decision. Whether someone chooses to take risks that I myself wouldn't is also their decision to make.

We all and we alone have to live with the decision we make.

I think rather than judging others and their decision, what's more important is to try to ensure everyone is making an as informed decision as possible. Then we can only hope for the best. Trail blazers are always going to be risk takers and even with the best information, sometimes things take a turn for the worst. That's how treatments improve or we learn whether they really are worthwhile or not.

I respect those willing to take a chance and I only hope that everyone goes into this with their eyes wide open, truly cognizant of the risks and limitations at this time. But what we CAN all do no matter our opinions is to light a fire under the feet of researchers to get them moving on working on this to provide us with the information we need to determine whether this is really a viable avenue for us. And to fine tune treatments so that they aren't trying to fit a square peg in a round hole.
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Postby costumenastional » Fri Mar 12, 2010 12:49 am

Justjazz, you are absolutely right to be sceptic over this. Believe me, please believe me when i say that i am even more. I can only imagine what s like to fight ms for as long as you have been. New, yet unproven "therapies" for MS are notorious for proving false in the past but maybe, just maybe this time there is something for us to really consider.

It wont apply to all of us. But it will cure many of us, mark my words.
And in the future it will help doctors to furhter categorize demyelinating diseases. Do you realize how huge that is?

I suggest you stick around. Your voice is heard as you see and noone is trying to attack you. And there are quite a few who know more stuff about ms than you and me apparently, regardless of how many years they suffer.
By no means we are experts as someone claims. I know i am not anyway. I am a patient with some hopes.

Appart from these meaningless debates there are useful info. Take your time, check it out. Maybe you ll be surprised.

Take care.
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Postby Lyon » Fri Mar 12, 2010 6:18 am

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Postby costumenastional » Fri Mar 12, 2010 6:31 am

Lyon, you make me tired man. Really, we get your point, you are absolutely right, in fact you are the best.
Do you really think there is even one naive person around? Cause i dont. I can only see people who dont need you to speak on their behalf.

Anyhow, one more time, you are right, can you please get of my back now?

Do you have a problem cause i believe that ccsvi will stop the progression for some of us?
Are you an idiot?
Dont you know that it is already happening for the last few years?

No more debating for me with you, you strike like a no brainer to me after all.
Come, go on and preach as long as you want but i dont think anyone really gives a shit.
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