This Is MS Multiple Sclerosis Knowledge & Support Community

I absolutely appreciate the skeptics and those who challenge the "rah rah" information.

Anyone who doesn't want to know the possible deficiencies or potential problems is being naïve. And that is dangerous.
Informed decision-making means paying attention to all information. The skeptics here aren't trolls muttering gibberish. For the most part it is on-topic, relevant and sound. We should all be considering it thoughtfully as well.

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Lyon, I put you on the spot by suggesting you make a decision, based on what we know. No-one says what we know is all black or white, or in anyway easy. Everyone knows CCSVI is grey as is information associated with many, many decisions we need to make in life. But nonetheless, a decision one way or the other needs to be made, even if it is the default, do nothing decision.

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Once again, to both "sides": Stop confusing CCSVI with MS. They are different conditions. The former is curable, the latter is not.

OK Lyon, I think what I hear you say is that you are conservative in terms of decision-making. This could be in terms of decision-making generally, which is how I put the query to you a few posts back, or could be just in terms of CCSVI. I'm not sure.

However others, due to their makeup or circumstances, might see things differently. Some of us are trying to make intelligent decisions, based on the information we have available, albeit knowingly incomplete informaton, but sufficient to weigh up the alternatives and take action.

don't know you and can't say what you would do but history is long with complaints that people were injured due to researchers not being thorough enough which makes this whole CCSVI situation seem fickle in that they are trying to push researchers into pushing things through without proper testing, despite the fact that researchers are aware that they'll be sued into the stone age afterwards if/when unforseen problems arise and those who pushed it will have returned comfortably into obscurity.
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I think it's interesting to wonder about the liability involved in not doing anything. If a neuro blocks ccsvi treatment and it is proven true, and their blocking results in disability are they liable? Will there be dozens of lawsuits against them for doing nothing?

These post proof liability cases are what interest me.

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sou wrote:Once again, to both "sides": Stop confusing CCSVI with MS. They are different conditions. The former is curable, the latter is not.

I think this is a gross oversimplification of things, and the kind of black/white perspective that can be dangerous. CCSVI is curable? We do not know that yet, as "cure" is a very strong word. It is treatable at this point, and from what I've read and seen, even the doctors involved wouldn't call an angioplasty a full-on cure for what seems to be a congenital malformation of some sort. We also do not know if CCSVI and MS are separate conditions. I strongly believe in the correlation between CCSVI and MS, possibly even as a causal factor, or minimally as a triggering factor. There's a few years of science, and then even more science, before we have any definitive answers to that. In the meantime, I think its a great thing that there are pioneering doctors and patients, out there doing this, with both anecdotal and tracking information out there. We forget that in the grand scheme of things, since the initial publishing of Zamboni's paper, it hasn't been that much time! There has been A LOT of positive things in that time, the thousands of MS patients treated who HAVE seen significant improvement. There are also A LOT of questions, like why there are some who do not respond and what are the best ways to treat some of these problems (to me it seems some of the types of malformations are a challenge to the doctors and they are looking for the best ways to identify, quantify, and repair). There is also the science of identifying the relationship to MS. To out and out say they are separate is something we just don't know yet, and it's not much different from saying they are one and the same or saying CCSVI doesn't even exist as far as being bold statements, factually presented, that we just don't know.

To add to what CenterofGravity said, some cases of CCSVI seem intractable by current methods and some cases of MS have shown improvement (lesions that have healed, legs that have walked) as an apparent result of improving the blood flow to neurons that had been compromised but still there.

Ask someone whose entire financial future is on the line if any of this involves a simple yes or no decision.

I'm new to this forum and late to this thread but Lyon, I think you just answered your question. As someone who had angioplasty a month ago and has not seen any major improvements, I would be devastated if I had put my 'entire financial future' on the line to get this done.

I made my decision for angioplasty knowing I may not get any results in terms of MS symptoms and knowing that I could afford to spend the money to take that chance. I was fortunate to have that choice and understand not everyone is in the same financial situation. If I had to spend my life savings or mortgage my home, I doubt that I would have made the same decision. Good luck in whatever you decide.

Although it seems hideously unfair for someone to win a monetary reward due to a doctor or medical establishment NOT performing an unproven treatment which does carry some risk and unknown if any benefit but, here in the US, stranger things have happened.

If you were in a building that was burning and there was a way out down a burning ramp, and you wanted to take it, but someone told you it was unsafe, so you died, would it be their fault?

Clearly if all the people that took the ramp live and all the people who don't died.

Counseling against taking self-preserving measures is tin some cases the same as doing harm.

it all reminds me of marketing class a million years ago..

adopter categories:

Innovators
Innovators are the first individuals to adopt an innovation. Risk tolerance has them adopting technologies which may ultimately fail.

Early Adopters
This is the second fastest category of individuals who adopt an innovation. These individuals have the highest degree of opinion leadership among the other adopter categories.

Early Majority
Individuals in this category adopt an innovation after a varying degree of time. This time of adoption is significantly longer than the innovators and early adopters.

Late Majority
Individuals in this category will adopt an innovation after the average member of the society. These individuals approach an innovation with a high degree of skepticism and after the majority of society has adopted the innovation.

Laggards
Individuals in this category are the last to adopt an innovation.

andisue50 wrote:Good luck in whatever you decide.

The irony is that Lyon doesn't actually have MS. I think his wife is symptom free after a probable CIS (I think that I'm right in saying).

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