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Your story sounds very similar to just about every single account I have ever read on this board. You are officially one of us now. Welcome to the club!By the way I had the exact same initial experience with this board that you did. It took forever for my account to get validated, so I just hunted through the search function until I had the answers to everything I was looking for. I agree with you, the search function is a lifesaver. I'm always amazed that so many people come to the board in a complete panic, where they are just looking for someone-- ANYONE-- to listen to their story and tell them they are okay. They write their post and then they get stressed out when nobody answers right away. But they could have saved themselves a lot of anguish and panic if they just sat down and spent about four hours digging through the search function. All the answers are there. Hell, all of the questions are there. The same questions and topics have been brought up on this board over and over and over over the past ten years, only by different people and different usernames. And through it all, there has always been one constant: BFS sucks, but it's only as bad as you make it. It's not life threatening and it is not going to kill you.Anyway, welcome to the board and let us know if you have any specific questions or comments about anything. From the sound of your post it sounds like you have a pretty good mental handle on everything. Yeah you panicked at first, but we all panicked at first. That's kind of like a rite of passage when it comes to new BFS sufferers. Did you have the ALS freakout? Did you start thinking, "Hey maybe I have MS. MS wouldn't be so bad. Let's root for an MS diagnosis!" You did all that? Good. Now that you've had all the tests, now that that nonsense is over with, let's move on to dealing with your BFS and how you can best minimize it.Personally I have had BFS anywhere from 12 years to 2 years. I'm not quite sure. For me it started very subtly and very gradually. It officially "peaked" about 2 and a half years ago, and since then it has kind of waxed and waned on and off. My BFS symptoms almost always depend on my sleep levels and my general anxiety level, so like most BFSers I try to keep all stress and anxiety to a minimum. Of course like most BFS people, I also have a pretty good case of health anxiety, so that tends to complicate things once in a while. But there are worse things in life. I mean, heck, according to my own self diagnosis I've beaten cancer and MS and ALS about forty or fifty times. That's got to count for something in the grand scheme of things, right? :D) Above all else, just remember this mantra: With BFS, twitches aren't you enemy. It is your interpretation of the twitches that is the enemy. If you don't care about them, they won't bother you. Anything else you want to know, just ask.P.S. Oh yes and here's my second mantra when it comes to BFS: When a doctor laughs at you, that's a GOOD thing. I always ask my doctors to laugh at me and please just tell me I'm an idiot. It helps me put BFS in perspective whenever I start to obsess about it again. Remember, to a doctor, BFS is about as significant as a flea bite.
 
Rob, a lot of this story as far as symptoms and symptom progression is concerned is like my story. Started off as a single repetative twitch in my upper arm, coupled with what I descibed as tingling in my calves ( pins and needles I guess using your descriptor). This progressed to twitching firstly in the calves, then later ( over a couple of weeks) to else where in my arms, upper legs and finally face. Tne only thing I would say is dont stress and trust your drs. Things will settle ( not necessarily the twiching but more so how you react to them). You have come to the right place!PS I also have cramps and a bunch of other stuff as well..part of BFS I guess!cheersRodger
 
Totally understand where you coming from mate. I've been through the same (Nueuro/EMG) with my calf twitches, and it was a really scary time.But with the test you've been through, you have nothing to worry about by the annoying BFS. I've stopped even looking at my calfs twitching now, don't need the worry and anxiety in my life. Your doing the right thing, and just focus on the good things in life. Otherwise BFS can really chew you up, and put you in some dark places.
 
Hi RobbieThanks for the helpful post describing your experiences. I hope that other people who are worried about their symptoms will be able to get comfort from reading of your experiences and the fact that you are all clear as regards the 'nasty' diagnoses that many of us dread at some point during the early phases of our problems. I am 21 months in to my BFS and am having a falre up of muscle pain in the calves and crampy pain in the feet which is most annoying, although I am pushing through this and keeping my exercise levels up.All the bestSimon
 
Rob,Wow! I read your post on Saturday, but haven't had a chance to respond until now. My story is very similar to yours, without the running... I do think it had to do with sitting at a desk though.I am 25 and work a desk job in Queens. Right after getting diagnosed with Celiac Disease, one of my very first BFS symptoms (along with perceived weakness in my hands), was a weird feeling in my left leg. My left calf felt tight and both thighs constantly felt like they were being tensed up while I sat at my desk. Thighs then started twitching sporadically (mostly hit and run, one pop twitches). I got myself to a neurologist and had a clean EMG on my legs and butt, as well as a clean neuro exam. That was in April of '09. I am still dealing with twitches and the anxiety that comes with it, DESPITE the clean tests. I am in the process of dealing with the real issue right now, which of course is anxiety. My neuro told me to get the anxiety under control the moment he said, "What you're having are called benign fasciculations." Since that appointment, my twitching has popped up in various parts of my body including: both shoulders, butt, both biceps, both arms above elbow, both thighs, back of neck, lips, chin, eyelids, arches of both feet, calves (occasionally) and more.The truth is that I KNOW that this is all benign. But being the hypochondriac that I am, knowing that I'm fine isn't the problem. Worrying that I won't be tomorrow, is. It's amazing when you go to doctors with these issues, and they basically can LOOK at you and say you are fine. I'm going on 15 months on this road, and still can do everything I did when it all started. Going to a doctor, squeezing his fingers and him looking at you and saying "you're fine" always helps.Hang in there, keep exercising as much as you feel you can, and stick with us... this board has been a blessing for me, and continues to be a place I come for reassurance and help with my own anxiety.-AntP.S. Maybe it has something to do with us being in NYC... crazy places lead to twitching. Ha!
 
There's a lot of comfort for me in these posts! I've had BFS (?) for almost 2 years and I've been successfully keeping my inner hypochondriac at bay until I started getting numbness in my fingers and feet about 4 months ago. Now here I am playing internet doctor again. I haven't gone back to my doctor yet about this and I haven't been to a neurologist but everything seems to be working fine I just have these weird feelings. Here are my theories (I am an internet doctor after all):B12 deficiency: the reason I believe there is a link here is because the tingling wasn't there before and now seems to be getting worse. Also I have been a vegetarian for over 20 years. I have had blood tests that have ruled this out though- but I wonder if vitamin deficiencies might not always show up during blood tests? I wonder about IBS affecting my ability to absorb vitamins also- I have had IBS since I was a child but I have never really looked into it or talked to a doctor about it because I've been embarrassed so I wonder if my non-treatment of IBS is affecting me now. I've never been tested for celiac disease or anything either- that will be the next thing I bug my doctor about.I was interested to read about the post who mentioned rosacea because the exact same time I started twitching I developed a skin infection. I feel pretty alone with the whole skin infection thing- although apparently they are common but I haven't read about anyone having twitching and skin issues at the same time. For me they are really connected- I've never had either before and I can't get rid of either (almost two years for god's sake). I have taken almost a years worth of medication to get rid of the skin issues and they still come back. I feel this goes back to vitamin deficiencies.For a while I thought there was a hormonal link because I do notice a rise and fall with my twitches based on my monthly cycle. But now I think it's like anything else- where periods just make things worse. And obviously this isn't an issue for men who there are plenty of on this site!I don't know what's going on- I miss having my good health! I try not to obsess about the twitching but it's hard when they are always there to remind you! There has to be a reason why, I mean sure- I'm a nervous person but is that really what could be causing such big symptoms? I just can't believe that's all it is.
 
Wow.. IBS. I am there. Very interesting with the skin irritation. Got some weird stuff on my hands 2 months before this started. Almost like the skin is just falling off. Not painfull but almost fast growing skin. Can not get it away but keep it down with cream and stuff. Never thought of any connection between the crazyness. Well, just wanted to tell you this. If you find out something more, please let me know. :D)
 
Hi, I'm not sure if either of you saw any of my other posts, but anyone with IBS should look into Candida or a food sensitivity. Its one of the key symptoms of poor digestive health. Our society has beat it into our heads that taking antibiotics don't have consequences and that whole wheat is good for you. These are two falsehoods. Antibiotics taken as a prescription or received through eating meat from animals that were fed them kill our helpful digestive bacteria allowing Candida to take over. In regards to whole wheat, it contains gluten which is one of the harshest proteins for our bodies to break down and digest. It is the leading food sensitivity causing food in western civilization. Concentrate on your digestive health and your IBS can clear up for good. Who knows, you could be like me and have your digestive health be responsible for your twitching as well. Its a fairly long healing process, but its well worth it if you consider all that you have to gain.
 
Well. I have a very good digestive health, I think. My body is not a trashcan. I have read some of your posts. Some of it is going waaay over my head, some of it are very interesting. What I miss is some research and sciance. Maybe you have it. I do not know but i think you are on to something. I just think it is a bit extreem, but maybe I will try it one day. :) I will read your posts
 
Thank you for the info! I have thought about the whole candida thing and then I admit I get lazy about considering how to change my diet. I know it is an excuse (but a pretty good one) but being a vegetarian I can't imagine how to limit carbs! I've made a huge mistake in my diet by replacing meat with extra carbs. So that, mixed with IBS could be related to the wonderful world of twitch city?!
 
That's great info, thank you! And yes, I eat a lot of soy- I didn't realize that soy is in so much of our foods, and corn (genetically modified versions). You are absolutely right- I need to make a commitment to my diet and stop googling MS (and other diseases) symptoms!
 
My own experience of BFS plus those of my patients is that very few if any have responded to dietary manipulation, except of course cutting out caffeine which does help a lot in some people.RegardsSimon
 
Yes it is true that diet or digestive health are to blame for everyone's symptoms. Don't interpret my posts to mean that I'm saying it is the only answer. What I am saying is that it is an easy solution to try and it potentially could be the answer. After all, it was the answer for me. That is all. Take it for what its worth.In addition, anxiety levels had a direct correlation to the severity of my symptoms just as RobbieBFS described. Exercising helped me reduce anxiety and thus helped as well. Although these two factors contributed to the severity of my symptoms, the root cause was still in my digestive health.
 
Re: twitcheeI've also been getting itchiness, but I don't have IBS or any other problem besides the twitching. Been wondering if its the weather, or related to the twitching? What works for you re: skin problem? Do you get raised red bumps/patches? I use hydrocortisone cream but its kind of a placebo...
 
Well I developed a reoccurring skin infection & eczema so I do use prescription cream almost everyday. I've also been on antibiotics for long terms to treat them. Maybe it wasn't worth mentioning on this forum but I did develop these problems and the twitching in the same month and I've never had any skin problems before. I've been trying to avoid detergents, soaps, perfumes etc. but the whole food sensitivity thing might be something for me to look more into. Maybe it's just wishful thinking though- that I can somehow control all of this through diet.
 

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