Posted: Thu Sep 16, 2010 11:35 am
Well, it's always excellent to try analogies, but of course, (most) people with MS are not pompous, vain, and "just hopelessly stupid." At least not the ones I know. And we certainly are not emperors! If we were we could be in positions of power affecting policy! Wouldn't that be great. 
Ans of course, an analogy like this is pretty much directly saying that the doctors involved with CCSVI are swindlers. That's directly calling Dr. Sclafani, Dr. Dake, Dr. Zamboni, Dr. Haacke, Dr. Zivadinov, and countless others SWINDLERS.
And by the way . . . I also don't agree with characterizing us as all "desperate for a cure," because the implication is that we are unable to correctly, objectively evaluate treatments, meds, procedures, and so on, and we need the calmer, more rational minds of those in charge to take care of all of us and tell us what's good for us.
In fact, the majority of us are better informed than our physicians, we are so used to endlessly waiting for everything that we have learned the art of patience when it matters, and most of us are quite capable of evaluating our options for treatment. The "desperate" comment that gets bandied around is an attempt to minimize our abilities. Don't permit it!
I am going to speak only to my personal experience, but I was told by a highly respected physician -- the director of his specialty at one of the top medical centers in the country -- that I had severe blockages in my circulatory system that might or might not be related to symptoms I was experiencing, but that should be addressed because crucial areas of my central nervous system suffered from a lack of blood flow. I could see the evidence objectively. I wasn't being strong-armed into anything. The choice was always mine, with plenty of discussion about the unknowns. We knew we were trying something exciting that could really change the way we approach these symptoms, but we didn't want to set expectations too high.
And incidentally, angioplasty for blood vessel blockages is a recognized medical treatment, no matter what your condition is. It's not like "weavers" creating a brand new "cloak" or procedure. A more apt analogy would be the chef borrowing the plumber's plunger because he realizes his kitchen sink is clogged and it's a tool that might help in the kitchen as well as the bathroom, and it works better than pouring a dose of corrosive Drano down the pipes every week.
Anyway, I saw a direct correlation between some symptoms and the angioplasty. It was not a "miracle cure." But it provided symptom relief far superior to any other intervention in my ten years of aggressive MS, and was far safer than the toxic options offered before, none of which were well proven.
I am not the emperor.
My doctors -- all of whom are smart, current, and in agreement about doing this -- are not weavers and swindlers.
Honestly, all of us are in the middle of learning about an interesting phenomenon, which we can do without insulting each other or the passionate, dedicated physicians who are dedicating their careers to this, like Dr. Sclafani, without profiting.
Each person needs to come to an independent decision, and each person needs to feel comfortable with that decision. I'm glad you can get stuff off your chest, but I believe we can examine questions, welcome debate, and support each other.
(Sorry -- too long -- but I don't have time for brevity, if you know what I mean! )
Ans of course, an analogy like this is pretty much directly saying that the doctors involved with CCSVI are swindlers. That's directly calling Dr. Sclafani, Dr. Dake, Dr. Zamboni, Dr. Haacke, Dr. Zivadinov, and countless others SWINDLERS.
And by the way . . . I also don't agree with characterizing us as all "desperate for a cure," because the implication is that we are unable to correctly, objectively evaluate treatments, meds, procedures, and so on, and we need the calmer, more rational minds of those in charge to take care of all of us and tell us what's good for us.
In fact, the majority of us are better informed than our physicians, we are so used to endlessly waiting for everything that we have learned the art of patience when it matters, and most of us are quite capable of evaluating our options for treatment. The "desperate" comment that gets bandied around is an attempt to minimize our abilities. Don't permit it!
I am going to speak only to my personal experience, but I was told by a highly respected physician -- the director of his specialty at one of the top medical centers in the country -- that I had severe blockages in my circulatory system that might or might not be related to symptoms I was experiencing, but that should be addressed because crucial areas of my central nervous system suffered from a lack of blood flow. I could see the evidence objectively. I wasn't being strong-armed into anything. The choice was always mine, with plenty of discussion about the unknowns. We knew we were trying something exciting that could really change the way we approach these symptoms, but we didn't want to set expectations too high.
And incidentally, angioplasty for blood vessel blockages is a recognized medical treatment, no matter what your condition is. It's not like "weavers" creating a brand new "cloak" or procedure. A more apt analogy would be the chef borrowing the plumber's plunger because he realizes his kitchen sink is clogged and it's a tool that might help in the kitchen as well as the bathroom, and it works better than pouring a dose of corrosive Drano down the pipes every week.
Anyway, I saw a direct correlation between some symptoms and the angioplasty. It was not a "miracle cure." But it provided symptom relief far superior to any other intervention in my ten years of aggressive MS, and was far safer than the toxic options offered before, none of which were well proven.
I am not the emperor.
My doctors -- all of whom are smart, current, and in agreement about doing this -- are not weavers and swindlers.
Honestly, all of us are in the middle of learning about an interesting phenomenon, which we can do without insulting each other or the passionate, dedicated physicians who are dedicating their careers to this, like Dr. Sclafani, without profiting.
Each person needs to come to an independent decision, and each person needs to feel comfortable with that decision. I'm glad you can get stuff off your chest, but I believe we can examine questions, welcome debate, and support each other.
(Sorry -- too long -- but I don't have time for brevity, if you know what I mean!
)
