This Is MS Multiple Sclerosis Knowledge & Support Community

Of course we all do this to a certain extent but when you are completely blocking out other people's ideas/arguments, I do believe this form of "pick and choosing" of information can be dangerous. For example, if I firmly(for whatever reason) believe that bee stings cure MS, I am pretty confident I could search Google and come up with numerous testimonies/professionals hailing this as the next new emerging MS therapy and if I posted these so called "facts" over and over and over again, people might start to believe them. I am not saying people are dumb. Hell reading is how we get a lot of our information but this has kind of become the trend of how we(yes not just people with MS) seek our "information". Although we will disagree I think this is what has happened to CCSVI and why so many people have bought into it(not saying it should not be investigated further.) Take a look at this forum-.Formula: Paste many testimonials of people who have had "recoveries" after angioplasty, add in some obscure medical posts you dig up on the internet,post here, and talk them up like they prove the second coming of Christ, and presto you have a legitimate MS treatment option!!! I will once again take a hiatus from posting on here, for various reasons, but I do encourage people to continue offering different viewpoints on this forum so that we do not become the "Fox News" or "MSNBC" of the MS support forum world! Wow, maybe I am starting to take this stuff a little to seriously!!!!

The weapon of choice for many of the most politically-powerful neurologists and other detractors of the theory of CCSVI is the main means by which they maintain their blockade on the science of it and their self-delusion, which is not only harmful to CCSVI/"MS" patients, but actually harmful to science itself, and harmful to the profession and practice of neurology. The Internet was never advertised to be free from such pitfalls, and it would be reasonable to expect that intelligent scientists would be the first ones to be able to avoid them, however it seems the Internet merely compounds what would have befallen this group in earlier times. They remain prey to greed, corruption, over-inflated egos, and opinions of themselves, which have the unfortunate side-effect of alienating and disrupting any possible communication with those who could assist them. The Internet is the great facilitator of whatever harm people choose to do to themselves and to others. It is a communication channel only. It is completely content-free, and unfortunately amplifies any errors users make. It is also a tool which is easily and frequently misused on purpose, and often without the user's awareness of it's power. More often than the ordinary foolish user, it is the non-nerd elite who are its victims.

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1eye wrote:The weapon of choice for many of the most politically-powerful neurologists and other detractors of the theory of CCSVI is the main means by which they maintain their blockade on the science of it and their self-delusion, which is not only harmful to CCSVI/"MS" patients, but actually harmful to science itself, and harmful to the profession and practice of neurology.

oh my...

Neurology is a complete waste of time for MS.
Neurologists don't like being challenged by patients they cannot help.
I sometimes wonder how it must feel to be a useless dr in a made up profession where nearly every patient you meet gets worse.
I guess neurologists develop thick hides to deal with their uselessness as physicians.
Patients have every right to know if their dr can help or not. The internet at least lets us learn some hard facts and offers alternatives that can be investigated.

I would think there's a certain comfort as an MS specialist, where they never have to take responsibility for their patient's worsening, but can always put the blame on the disease itself or the patient for not taking DMDs.

Cancer researchers you are all a bunch of bums and criminals because you have not found a cure for cancer. GI Specialists you all are worthless because you have not yet found a cure for GERD. Audilogists you stink because there are still people who are deaf and you love it or else you would be curing people. Optometrists you make my stomach turn because you continue to allow people to suffer from blindness while you just sit back and roll in the big bucks. To all of you specialists who work in a field where a cure has not been found, SHAME ON YOU!!!!!!!! While it is nice to have something tangible to direct our anger towards unfortunately the culprit is the disease itself, not the people who treat it.

>"I will once again take a hiatus from posting on here, for various reasons,"...1 day hiatus! Not to rile you but there is lots of recent info about a supressed cancer cure...due to that pharma group we lump in with evil doers.
http://www.arbitragemagazine.com/topics ... ld-7debut/

tazbo wrote:>"I will once again take a hiatus from posting on here, for various reasons,"...1 day hiatus! Not to rile you but there is lots of recent info about a supressed cancer cure...due to that pharma group we lump in with evil doers.
http://www.arbitragemagazine.com/topics ... ld-7debut/

lol. You got me there tazbo. I just thought that since my recent post was used to start a thread, which I must admit was very flattering, I needed to make a response. I didn't want to spill the beans but rumor has it that the governement will soon be announcing that there is a cure for every single disease known to humans but unfortunately the facilty that holds the antidotes is being guarded by a bunch of sasquatches paid by you know who, BIG PHARMA!!!!!!!!

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Cece wrote:I would think there's a certain comfort as an MS specialist, where they never have to take responsibility for their patient's worsening, but can always put the blame on the disease itself or the patient for not taking DMDs.

I'm amazed at the cynicism of this post, actually I'm not THAT amazed given the quality of similar statements I've read by other pro-CCSVI members of this forum.

I guess I'm lucky in that I've always been very impressed with the quality of care I've received from the neurologists and MS specialists who have treated me, even those that are very negatively disposed towards Dr. Zamboni and the CCSVI theories.

I can't imagine any of the MS specialists I have dealt with feeling any comfort in my continued progression by being able to put the blame on the disease itself, even after learning of my stents and CCSVI treatment.

Oh well, I guess there are as many ways to view the world as there are people in it.

--Tracy

I can't imagine any patient blaming a doctor for their illness. That's worse than shooting the messenger. I can, though, imagine a doctor blaming the Internet for what people have managed to do with it, in spite of any efforts to persuade them not to.

I, personally, would never have blamed my neuro my diagnosis or what I considered "pushing" the meds on me. After all, what else is there but some kind of injection in the "hope" of forestalling the inevitable. I do, however, thank God every day for the internet for revealing another option that at least for me, since my procedure, has given me 90% symptom relief. In the end, the internet is what you make of it (after fielding out all of the b.s).

questor wrote:

Cece wrote:I would think there's a certain comfort as an MS specialist, where they never have to take responsibility for their patient's worsening, but can always put the blame on the disease itself or the patient for not taking DMDs.

I'm amazed at the cynicism of this post, actually I'm not THAT amazed given the quality of similar statements I've read by other pro-CCSVI members of this forum.

I was specifically thinking of it in comparison to other specialties, where there is more immediate feedback. Your patient gets worse, you contributed to it, you learn from that, you don't repeat the mistakes.

There's a certain discomfort if your patient dies as a direct result of your choices. This discomfort is not something an MS specialist has to experience.

MS patients get worse just because that's what we do. The MS specialist's bag of tricks is remarkably ineffective. And that being the case, it is hard to make a mistake one way or the other.

Unless..

The Neurologist or MS Specialist prescribes a drug that could possibly kill you. We have seen this during drug trials, and after too, when they give you a list of drug choices to pick from.

Many chemo drugs on the market for MS. Even that latest drug Gilenya has risk.

Fingolimod has been associated with potentially fatal infections, bradycardia, skin cancer and, recently, a case of hemorrhaging focal encephalitis, an inflammation of the brain with bleeding. Two subjects died: one due to brain herpes infection, second one due to zoster. It is unclear whether the drug was responsible for the events.


Fingolimod (rINN, codenamed FTY720, trade name Gilenya) is an immunosuppressive
The manufacturer announced on March 10, 2011 that it had received a notice of compliance from Health Canada and that the drug would be available April 1, 2011 at pharmacies.

http://en.wikipedia.org/wiki/Fingolimod

You have to do your own research, or have someone advocate for you.

scorpion wrote:Cancer researchers you are all a bunch of bums and criminals because you have not found a cure for cancer. GI Specialists you all are worthless because you have not yet found a cure for GERD. Audilogists you stink because there are still people who are deaf and you love it or else you would be curing people. Optometrists you make my stomach turn because you continue to allow people to suffer from blindness while you just sit back and roll in the big bucks. To all of you specialists who work in a field where a cure has not been found, SHAME ON YOU!!!!!!!! While it is nice to have something tangible to direct our anger towards unfortunately the culprit is the disease itself, not the people who treat it.

You really have a short-sighted view of research. Primary research does not focus on finding a cure, it focus on explanations.

Cancer researchers have a very accurate model about how tumors develop based in their DNA. Audiologist and optometrists also have accurate classifications of the conditions they deal with and know perfectly how they develop, even if they cannot cure some of them.

Can you say anything similar for neuros and MS?