Living With BFS: Is It Here to Stay?

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ChauBao,If it is autoimmune related it does not necessarily mean you will have it forever. GBS is an autoimmune nerve condition that is usually completely cured. Also, whatever causes your body to produce antibodies that attack or interfere with your nerves can be halted for the same mysterious reason it started in the first place. It can also be halted through medical intervention. I base this on what my neuromuscular specialist told me based on his research and personal experience with patients. When he told me my condition was likely autoimmune, he followed that statement with hopefully it will be monophasic. He may be full of it and just speaking based on what his cat told him or maybe I am making the whole thing up. However, there may be some truth in what I'm saying and that truth may be comforting to some who think their problems may be autoimmune related.Krackersones
 
I had terrible almost weekly migraines six years ago. These were the full fledged, see sparks, black tunnel vision followed by hours of nauseating pain. Nothing helped them. Nobody could tell me why I suddenly started getting them. Then one day, I didn't get them anymore. I never ever ever thought I'd get to a point where they'd go away. It became part of my life and I actually planned around them. I knew when I was due for the next big one, like clockwork and I'd avoid parties and other things when I sensed one was coming. Point is, they just stopped. History would've told me they'd continue or they'd taper off. But they didn't. I just didn't get them anymore. Yeah, I get an occassional bad headache if I've drank to much alcohol, or get dehydrated but these classic migraines disappeared. In my mind the way BFS waxes and wanes is similar and some of us may just stop twitching or more importantly just stop noticing it at some point, and hopefully losing the anxiety over the twitches will help reduce the symptoms.
 
BASSO YOU ARE COMPLETLY WRONG! there is even a syndrome called multiple autoimmune syndrome (MAS) when you have more than three autoimmune disorders. autoimmune disorders almost never stay at their one, the first one will most probably be followed by another one. per instance more of the half of people with vitiligo (like me) are developping another autoimmune disorder of the thyroid, mainly hashimoto. michael jackson had vitiligo and lupus, another autoimmune desease. you are totally wrong saying they don't come together. the opposite is the case: they infact COME together. however, the question for this forum here is, if BFS is an autoimmune disorder or not. and EyeoftheWild, i was not complaining but answering to Krackersoness post that autoimmune deseases go away. i have been told by several doctors and specialists that they don't. stop telling me your crap here EyeoftheWild! if you have something really scientific and concrete to say then do it, but you are only offending people who are not telling what you want to read! this is a forum where any approaches should be accepted.
 
ChauBao,I agree that autoimmune problems are not easily cured and cured is probably a bad word. Even my neuros haven't used that word but just suggest that the symptoms can lessen or go away but saying they can does not mean they usually do. In any event, there is some hope surrounding it and it is not an inevitable downhill spiral.Krackersones
 
yes Krackersones, i am sure there is hope that at least the symptoms cease or not worsen.i think, a lot can be done with a good diet. most autoimmune disorders require a special diet, full of natural antioxydants: a lot of fruit, vegetable and almost no meat, no fish, almost no diary products. with autoimmune disorders most specialists suggest a baseorientated nutrition. unfortunately there is a lot of temptation around in the world of food;-)
 
There are multiple autoimmune syndrome (MAS), but there are not, multiple autoimmune processes. Oh, I'm sure if you wish to dig around on google you will find thing that support your claim, but you weren't meaning that, and in any event, even scientists contradict themselves with regard to the systems of the body. All you have to do is read this forum to know that! You are attempting to say that you suffer from three separate disorders. Good for you, go for gold. From the mouth to the anus there is one tube. It is called various things, and there are various disease names attached to this very long tube when things go wrong, but there is no denying that food goes in one end and comes out the other. We are a whole, not just a conglomeration of parts. Because our minds are feeble, and for the sake of understanding each other, we assign different names to this whole, but it is still one body. There is always a starting point for any illness, it is like that one thread that comes loose in rug. If it is not tied off, the rest of the rug is in danger of unraveling. The same is true of our body. There is an undercurrent of illness that preceded all the others. And, in many cases, this illness in the body first began in the spirit. Further still, this disharmony may have even begun before we were born. In other words and inherited unwellness.The people that get better here are the ones who say "screw it, I'm getting on with things." They unstick themselves from the pathology of bfs in favour of the affirmation living. You may have written some positive things here Laurent, but I haven't read any of them. If you endeavored to help people through a positive outlook you would find that infectious, and in turn, you would begin to feel so much better. Your "processes" would begin to drop away, because you wouldn't need to hold onto them anymore. As I say, I have no investment in you. You have your road to go down and I wish you the very best. What I would say is that you need to ask yourself "how is my way of living my life working for me?" It sounds to me like you are dragged down by various ailments...are you happy to be so?Basso
 
For me, it will be 3 years in December since my first symptoms of BFS. In all honesty, I have good months and bad months. Some months I think to myself, ugh this is getting worse! Others, I hardly notice twitches and when I finally do, I will think, "Well, it's about time, it's been awhile." It sucks, but BFS is something I have learned to live with. I don't even worry about ALS anymore and sometimes when I am having a bad month, I will log on to this website and just wish I could give peace to some of you that worry about it. I went through it all, and I mean all of it. I have had every.single.twitch.buzzing.pain.numbness. that you could think about. Even my eyes move from side to side when I'm tired. I really have experienced it all. I wish I could answer your question by saying I never twitch and it's completely gone, but I can't. Although, I can tell you your mind gets peace and once you relax about them and don't think about it, it's a TON easier to deal with. GL
 

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