Unbelievable Causes of Symptoms Explored

Hi all -So I was reading about the many things which cause our symptoms and landed on this page which I've linked to several times already: As you can see it reflects an unbelievably deep understanding of possible causes of our symptoms that fit within the Channelopathy area. If you're able to really read through that page, you'll start to see how it may apply to us.What struck me the most however, was the fact that I always see pages like these, with such in-depth analysis, and advanced understanding by the author that I could only *dream* of my neurologist having. If our meetings with our neurologists included discussions like what you see on that page, wouldn't you feel like you were in good hands? Even better hands than the Neuro who just looks for ALS then sends you home "Healthy" ? I know I would.No doctor ever seems to comprehend anything past the basics. And while they're good at ruling out ALS and MS, they are failures when it comes to comprehending what you see in the link above.So I had an idea. Find out who wrote the above article, set up an appointment with him, and present myself (and all of you) to him. I found out that the author: Dr. John England still sees patients, and I have set up an appointment with him. Do you think it will be a waste of time? I realize it will mean a "road trip" to new orleans, but that part could be fun. I plan on contacting him prior, by email or fax, presenting my situation (and letting him know about all of you as well), to see if he feels it would be worth the trip to come in. For someone as research-minded and educated as him, I am hoping he will view this as an interesting opportunity to do some discovery. We've got a microcosm of people here who are undiagnosed. He looks like he wrote the book on Channelopathies. Maybe he can discover something. I almost wish I could bring a couple others, so that there would be better representation. But I will discuss that with him.

He had me up until the end of the last paragraph where he stated " Additionally, understanding the ion channel basis of these diseases should provide the basis for the development of more effective pharmacological treatments."No matter what the approach to understanding a disease, pharmaceuticals will never be the answer to the cure. Pharmaceuticals can only mask symptoms, meanwhile the cause of the problem persists.I agree with you that there is truly something wrong with our medical system because most doctors look through your symptoms and rule out what they've been trained to look for. When you don't fit any category for a major disease you are sent home 'healthy' even though there is something wrong (otherwise you wouldn't be there in the first place). This doc seems to be taking a step in the right direction but he's still not thinking outside of the box entirely. It is sad that the medical system is taught and paid for by the pharmaceutical industry. Is it no wonder that doctors approach medicine this way without even realizing the big picture? Unfortunately it is the people that pay the price...

if you can afford it what can it hurt BFS? interesting article...my neuro while not as informative as the article did order VGkC antibody bloodwork...the results are still pending....that bloodwork takes forever!

Kevin, I admire your tenacity in trying to get to the bottom of the BFS problem, I really do. Wish I could accompany you on your 'road trip' to New Orleans: I could do with getting away.

I'll try to get some correspondence going with him to see if he'd consider the visit worthwhile. Would hate to travel all that way and end up with a 15 minute office visit no different from any other doctor visit involving a 5 minute drive.When I asked my ER doctor buddy which doctors to go with on this BFS thing, he always said the same thing: Find the smartest one.Dr England definitely fits that category with this article. Dr Nancy Klimas and Dr Rey are others. I thought it was an interesting idea to start looking at the Authors of these types of articles and see who they were. Fortunately this author is a doctor who sees patients still.At the very least, I would like to bring BFS to his attention, and let him know about this community. We are a researchers wet dream. And most of them don't even know about us. A group of hundreds of people with the same symptoms that could fit on a short list, they're so similar to eachother. In other words, consistency.---------------------------------By the way, the article above may shed some light on why Gatorade helps certain people here so much (myself included). Potassium Sodium are its ingredients. And I have seen reference to supplementing sodium and potassium as a way to treat channelopathies. Mind you - this isnt curing the condition. Channelopathies, if I am understanding correctly, are a symptom of a dysfunction. The dysfunction itself could be viral, immune, etc. So Gatorade wouldn't cure BFS as much as maybe treat the symtpoms, for some. And who knows, maybe after several weeks/months of correcting the channelopathy, you'll have total relief from BFS as well. I am working on creating a drink for myself which is identical to Gatorade, but without all the sugar and no BVO.

Absolutely agree on that part too, well, I guess you already knew that. I mean I actually worked in pharma science. Do not get me wong, medicals can be a blessing in some ways. But for many complex diseases, a change in lifestyle ans own effort are the key to real healing. Far more than suppressing symptoms. " healing" BFS is sooooo much more than doing nothing. It is learning to listen to your body and see what is not doing you good. And stopping it. It is also getting control over anxiety and obsessive behaviour. For some it is about acceptance. This all it not NOTHING. It is the opposite of nothing. But it is about patience too. If you have stuffed your body and mind with harmful things for years, do you really honestly expect a fast cure within days? There is no drive- in for stuff like that. But what I am very very sure of: there is no healing as long as the mind goes nuts. Especially about this related anxiety and obsession. At some point , when I was thinking about BFS and anxiety, I thought : " hey, somehow that pattern looks familiar to me". I have no clue if you are familiar with HIV a bit, but : that little Ahole hides in the cells you need to fight it. And there it waits for an external trigger and then starts the full attack. Same for this anxiety and obsession : you need your brain to fight it. We all should be able to a accept we are not dying quite early , usually after a doctor telling us we are OK. Our brain shouls start to calm us and our bodies down and prepare the way to healing. BUT: It cannot. Because it is hiding in the organ that is supposed to fight it. In our brain. That is a huge mess because of this, we cannot attack it and get rid of it. So we are trying to feed our brain with information and information and ideas and websites and we expect it to use that " food" and make us happy and un - anxious again. But it doesn't work, because it it has installed itself in our CPU. Damned thing. But we don't see that and then we get angry with ourselves, because we don't work as we are supposed to. We are disappointed and depressed. And try to heal ourselves with more information and more pressure we put on ourselves and our bodys. That is all part of the vicious cycle of BFS and anxiety . The causes for BFS are probably hundrets, but I think one basic problem is the way we treat our bodies and mind. I know it sounds strange, but I cannot get tired of saying that I took a lot of advantage from my BFS. I have learned a lot about myself , I kind of changed my life and I am a much happier person that before BFS.

And this may sound silly and simplistic, but if you want to take a "drug" for BFS .... if you want a concentrated injection of pure medicine .... and i mean this .... start drinking the juice from organic vegetables. Leafy greens, bright colored vegetables, and everything in between. There are literally thousands of phytonutrients in a 12 ounce glass of pure juice extracted from organic vegetables. So if you want something that will benefit your body on 100 different levels, on the cellular level, get a juicer and start juicing daily.

Just an update on this:My appointment with Dr. England is in April. The guy who wrote this article: If any of you want to come along or something - I was thinking of writing a letter to him presenting the situation. A large group of undiagnosed people who fit quite well into his research areas. He may look at it as an opportunity to do some research. Totally depends on his mindset I suppose. The fact that he has a 4 month waiting list for a single office visit tells me that he's in high demand. Educated. Knows his stuff. I know Seepi mentioned wanting to come. If anyone else would be interested, let me know. I need to draft a formal letter to him though, and present the situation. See if he thinks its worth our effort hopping over to New Orleans. And whether you guys could just come along or if you'd need separate appointments. I may need help drafting the letter because I tend to write too casually. This is a highly technical Doctor, who may respond more favorably to a well written letter by a non-layman. Any volunteers?-Burger

Good on you for finding this neuro. I would be so interested to see him, but unfortunately I'm too far, far away. I would still consider a holiday and seeing him at the same time. It depends a lot of what you think after seeing him, and what he can offer. I saw two neurologists in Sydney and a third who did my two EMGs. I have to say none of them wanted to see me again, I was the one to insist on the follow ups, as I feel I must find out what is causing all this. They all suggested I had VGKC antibodies, which I did and came back negative (after a three week wait). Good luck with your appointment I'd be so interested to find out what he said.Anita