BFS in a nutshell

Information about how to manage or reduce the severity of BFS symptoms

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Postby dmknycity on February 15th, 2006, 12:57 pm

Arron, Thank you so much for your comprehensive analysis of BFS, which is very comforting. I had had periodic twitches for as long as I can remember, but never concerned me. About 3 1/2 months ago, two days after significant heart angiplasty, my leg started to twitch in the knee area and wouldn't stop - went on for 10 days while other twitches developed. Here's an irony - I had just turned 65 and someone sent me a Biography of Lou Gehrig, which I was reading (altho hadn't gotten to the part where his ALS started). Anyway, went on the internet and you know the rest. Determined to not go to a neurologist b/c didn't want to confirm the worst, went to my internist who told me that I didn't have ALS but was unduly stressed. Didn't totally believe him so started doing all of the strength tests - with great success. I am back to full workouts and able to run/power walk 5 miles 4 times per week. About 6 weeks ago, blew out my rotator cuff while bench pressing. Actually believed that that might be a classic ALS muscle weakness but orthopedist said 100% not. Still twitching all over - however, your post and other related posts, plus a general understanding of BFS has me, FINALLY, convinced that I do not have ALS and I can once again relax and smile. Twitches are annoying - big deal! Thank you again!!!
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Postby dmas on February 26th, 2006, 5:11 pm

I just found this and what a breath of fresh air this forum has been. My problem started 4 years ago. I had numbness and a bit of clumsiness in my hands and pain in my wrists. Then I made the mistake of my life and got on the net and read about ALS. I started obsessing about it almost immediately and suddenly I started having strange symptoms such as a feeling of “weakness” in my legs occasional “difficulty” swallowing etc. I’ve always been an athlete and still vigorously work out 5 times a week. From time to time throughout my life I’ve suffered from muscle twitches that I just chalked up to over exertion. When I read about ALS and the muscle twitches associated with it all hell broke loose. That night lying in bed I started getting twitches all over my body. I went to my doctor and he diagnosed me with Carpel Tunnel and told me that the twitches were from stress. I went home and still was convinced that I had ALS. I went back to my doctor. He said that he thought I was fine but would send me to a very good Neurologist that he had utmost confidence in just to make sure there was really no underlying problem. I went through a complete exam getting strength tests and an EMG. The Neurologist told me that I had very mild Carpel Tunnel in both hands and that I had slightly brisk reflexes…that this was well within the normal range that you would see in healthy people but just in case he would order a brain MRI (The MRI turned out to be negative). Well the reflex thing really got me going and I pressed him about ALS. He finally said emphatically that I did not have ALS and that the muscle twitches were caused by stress and that he saw no sign of fasciculation’s on the EMG and no signs of loss of strength or muscle atrophy. Well that was 4 years ago. My fasciculation’s and other “symptoms” have never completely gone away but after months they did begin to fade. However, even though my symptoms started to slowly get better I never really gave up on the idea that I had ALS. I replayed the visit to the Neurologist over and over in my head trying to gain any valuable clue from my recollection of his examination that would give me insight as to weather I really had ALS or not. After all my reflexes were brisk and he said that I had mild Carpel Tunnel in both hands. Could he have been wrong? At the same time I was determined that I would not research the subject any more on my own and convince myself that I have a problem when I do not. I am still blown away that my muscle twitches started in earnest the same day that I read about them. Bottom line however is that I went on testing my strength for these 4 years and actually have gotten stronger not weaker. I have no exercise intolerance thankfully. I’d do, and still do real crazy stuff like fingertip pushups hoping downstairs on one leg landing only on my tip-toes etc . Proving that I could do these things and improving at them meant that I wasn’t loosing strength…yet at least. Recently, the twitches have really flared up again and my “symptoms” have come back. My right hand feels weak and clumsy with loss of sensation as I type this. But bottom line is that I can type just fine and I’ll go and do 10 fingertip pushups after this and it will be easy. Intellectually, I know that I do not have ALS but getting over that hump of really believing that I don’t is a different story. Thank you for this site and the answers to questions that I have long had regarding my muscle twitches. My primary care physician is excellent but was unaware BFS as a defined syndrome per se and the Neurologist did not give me the detailed in-depth answers to my questions that I needed at the time. If I would have had these answers 4 years ago it may have helped me greatly.
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Postby tewest99 on June 8th, 2006, 10:46 am

your story sounds all too familiar. I suffer from OCD as well and have been through this a lot in the last 7 months. I am currently battling another bout of worry because my wife mistakenly told me a friend of mine had ALS but she was mistaken. It brought back all the worries again (a trigger) and then I started to pay attention to every little twitch. I'm going back on Zoloft to get over the hump. I've had 3 exams and EMG's, even one by an ALS specialist in the first 4 months of my twitching. And I was twitching much worse then than I am now, but the results were all the same ... 100% perfect exam and clean EMG. I need to have faith in God and I should be happy with such great news. CBT, medication (sometimes) and mostly faith and time, can heal this problem...

God bless you, you're not alone
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Postby HeavyMetalDude on July 6th, 2006, 11:04 am

Well, I was diagnosed with PD (Panic Disorder) about 2 years ago. Since then, I've come a long way in controling and overcoming. Read many books on the subject and Lucinda Bassett's
Attacking Anxiety & Depression program is awesome! And of course, GOD, above all else, is the reason for my success. Reason I'm here is because I too recently began experiencing twitching in my knuckles and fingers as well as on my toes.

It scares the hell out of me. I fear I may have Parkinson's or something else. Of course, my Dr. says he believes it to be part of my anxiety disorder and I pray he is right! The twitching isn't 24/7, but does happen quite frequently throughout the day. I can say that in my life, throughout the years even going back to my teens, I have had the same twitching. It would come then go for long periods of time, then return, only to go again. I guess I can take some small comfort in that. But since I have anxiety, my mind tends to catastrophize everything. What can be simply my nerves causing the twitching, my mind believes is something much worse and I begin creating scenerios in my head that I'm going to have parkinsons disease and that this is the first, early symptoms of it, etc.

I guess I just need to vent, this is why I'm here. My wife tells me not to worry, that I'm fine, that my Dr. already told me not to worry, that in his opinion it's not parkinsons. But, here I am, 12:07pm, twitching occuring, pains in my stomach, andrenaline rushing though my body. Luckily, I'm not having a panic attack because I've learned how to stop the panic attack in it's tracks. But the anxiety however, is still here and with every twitch, my anxiety grows and the andrenal flows! Can anyone relate?

I don't have any facial twitching, although in my life, I have experienced tics on my face, but never anything too freaky, just mainly a finger here or there or a toe here or there, basically.
Sometimes I might feel a light "jap" in a muscle, like a bicep or even once on one of my butt cheeks. But mainly the knuckle/finger and toe.

I also posted on another forum, under another name, which is what linked me to this forum. I gotta tell ya, I feel like a weight has been lifted off my shoulders!!! I truly hope that what I have is just BFS and not Parkinson's or ALS.

Thanx.
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Postby Wolverine on July 6th, 2006, 1:19 pm

I was also dx'd with anviety/panic disorder. Like you. I have had twitching on and off my whole life. Not until recentley did I decide to worry about it and that threw my twiches right through the roof. I don't know what made me all of a sudden start worrying about it when I didn't for the first thirty years. It threw me into panic attacks in the middle of the night. I too, with some help from Zoloft, have gotten over the panic attacks. My doctor has not dx'd me with BFS, as he does not believe in it, but he is convinced I have nothing seriously wrong with me except for anxiety.

So you ask, can any of you relate and my answer is YES. I know there are many other people here that can relate to your story as well.

Hang in there and believe your doctor and wife. I know it's hard, but you need to do it for your own mental and physical health. Doctors have no motive to tell someone that they are fine even if they think that they are not. That could screw them very badly with a malpractice lawsuit. Therefore, take solice in the fact that your doctor told you this. I much rather have anxiety disorder than any other disease and I'm sure you feel the same way. Take that diagnosis and learn to live and deal with it.
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Postby HeavyMetalDude on July 6th, 2006, 2:13 pm

Ay Wolverine, cool name!
Yeah, like you, I too have had twitches my whole life, basically. From my toes contracting, to my fingers. And like you, I never really worried about it at all. And since I never worried, I guess I never really noticed them all that much except for once in a while. It was only recently that I decided to start freaking out and googling symtoms which of course led me to Parkinson's disease websites that scared me to no end! Then I read that Michael J. Fox, who has Parkinson's disease, first found out about it because his pinky was twitching. That sent my anxiety through the roof!!!

So you say your Dr doesn't believe in BFS? Is BFS not a recognized disorder by the medical association? Can it actually be diagnosed by a general practioner or do you have to see a neurologist? Anyway, thanx for the reply, much appreciated!
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Postby Wolverine on July 6th, 2006, 2:28 pm

I never saw a neuro, my GP did not see the need. He did perform every test a neuro would of performed, and mostly he did this because I insisted. He also did the typical neuro physical exam when I saw him, although at the time I didn't know what he was doing. I then relized after reading this board he was performing typical neuro strength, balance and sensory tests. I was convinced I had MS and he did these tests (MRI, EMG, tons of bloodwork, x-rays) to get me over my worry. I asked him if I should see a neuro and he said he did not see a need but would give me a referral if I wanted it for my own peace of mind. That was all I needed to hear from him to ease my mind. He said with all of my testing, if anything was seriously wrong with me, it would of shown up by now.

I do think BFS is a reconized disorder by the medical community for the most part, but some doctors have their own opinion on it. My GP thinks it is a wastebasket diagnosis. I really didn't care what his thoughts were on it though, as long as I know I don't have a fatal or debilitating disease. Also, there is no cure for BFS, therefore the way I look at it who cares if I am or am not dx'd with it because there is nothing I can do about it except to learn to deal with it. I also figured that the fact he had a opinion on the disorder, that he knew and had knowledge about it. That was fine with me.

Also, BFS is a dx by exclusion. You will most likely not walk into a doctors office and have them tell you that you have BFS. Usually they will put you through a battery of tests to exclude any nasty disease and then when all the tests come out normal, they give you the BFS diagnosis.

That is pretty much what happened to me, except I got the Anxiety Disorder dx instead of the BFS dx.
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Postby HeavyMetalDude on July 9th, 2006, 8:53 am

Should I worry because my toes and the arch of my foot also has a twitch? Does BFS affect feet/toes as well, or just as far down as the leg/calf area?

My twitching includes my fingers
(it changes from day to day as to which finger and it feels as if the knuckle is being pulled, thus making the finger move)
as well as the arch of my feet and a toe will twitch and it will also switch the toe randomly. But I don't actually have any "shakes". My hand is very steady if I hold it out. Sometimes I'll feel a twitch on my neck, later on i might get a twitch/pinch on a bicep or a theigh. When it's on a body part that's not a toe or finger, it feels more like a poke or a jap. or like if someone lightly squeezes my muscle. Does this sound like BFS?
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Postby portraitgal on July 9th, 2006, 9:50 am

You poor boy! You are wearing yourself out. I thought I told you you were fine! You are obviously not going to take my word for it...I still say it's BFS. The toe thing is normal for BFS. BFS itself isn't normal, I can understand why you're freaking out.
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Postby HeavyMetalDude on July 9th, 2006, 10:22 am

Hey PortraitGal,
thanx for the encouragement, I really appreciate it. I already suffer from anxiety anyway, so I basically am now focusing on the twitching, non-stop. And of course, I'm catastrophizing it, like I tend to do with any other, weird symptoms I've encountered in the past. I always believe it's something terrible and un-curable, then it always turns out to me something minor. I pray that's the case w/this too!!!

I've actually had these twitches basically my entire life, more or less. I can remember back to when I was about 17 or 18, having twitches. They never really freaked me out back then. Then about 4 or 5 years ago, I had a flare up w/the twitching, so I did some research on them to maybe find some comfort, but instead I came across an article about Michael J. Fox and it freaked me out!!! Eventually I let it go. Now fast forward, 4 or 5 years later to April of this year, I noticed the twitching flare up again and it freaked me out all over again.

I came across an anxiety disorder website that said that twitches on fingers and all over the body is sometimes a symptom of anxiety and bad nerves. That included the pins and needles/itchy sensations as well. That made me feel better. I went to see my GP and he said he honestly didn't think I had Parkinson's at all. And then he explained why, etc.

But fast forward to the present time, I have another flare up, so I do research again and it led me to a Parkinson's disease and ALS website. Bad idea to google finger/toe twitches!!! (Cybercondriac)

My anxiety level has been through the roof the past 3 days!!!
Anyway, I'm seeing my GP again tomarrow, and he's going to run some tests. Hopefully if I get a clean bill of health, he'll be able to talk some sense to me and maybe I should go on some meds or something. Maybe some benzo's, I don't know.
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word of wisdom a true gift...many thanks

Postby holbalsa on July 10th, 2006, 4:17 pm

***********************************************************
What is the difference between "perceived" weakness and "clinical" weakness?
A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it’s in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.
Fatigue and "perceived" weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual "weak" feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn't really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back. A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor's appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren't even aware of. BFS "weakness" on the other hand, is pretty much only fatigue and although you may "feel" weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn't move at all.
***************************************************************************************************************************************************************************************
This post By AARON- has been cut and put as my screen saver- there is no way that I can convince myself that all my symptoms are actually A.L.* with the real facts before me.

Thank you AARON


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Postby HeavyMetalDude on July 14th, 2006, 5:21 pm

....
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Re: BFS in a nutshell

Postby HeavyMetalDude on July 18th, 2006, 7:13 pm

Arron wrote:The big problem with SSRI's, (even though they work quite well once they get into your system and start working), is that the first symptoms and side effects during the first couple of weeks can be really harsh. These side effects include severe anxiety, twitching, body jolts, sleeplessness, hot flashes, tingling from hell...


How accurate is that statement in regardards to SSRI's and the first, early side effects of use? If it is true, then that might explain why my twitching has increased a bit since I started taking "Zoloft" a little over a week ago, after my GP presbribed them to me. If it is accurate, then it will ease my worries a bit.
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Finally!

Postby hypohondriac on September 28th, 2006, 10:31 pm

I am one of the more recent BFS "sufferers". And after a week long horror it has finally come to an end thanks to this great post by Arron! Thank you!

My experience began a couple of months ago when I was away on holiday and after receiving some very stressful news from home my eye started twitching (actually a vein under my left eye). At first I thought it was going to stop but it would only stop for some hours and then continue again. Oh how agonising that was!

Thankfully at the time I had limited access to the Internet so I couldn't do much research. I did notice some fasciculations in other areas of my body too but these didn't bother me as they weren't so annoying.

Then all the symptoms stopped.

A week ago, after having a few stressful weeks moving house, my left eye started twitching again but this time on my eyelid. The twitching wasn't as frequent and as annoying as it was the first time but it still bothered me especially since I was feeling a headache too. Of course it must have been a brain tumor, what else?! - I told myself.

So I got online and what a mistake that was. Amazing how we can convince ourself that out of 100,000 people we're the one to contract some awful, incurable disease. I found out about ALS, started noticing twitches all over my body, started feeling fatigued. A couple of times I came home from work and had to go straight to bed. I would feel hot, then I would feel cold. In the morning I would feel fine, but as the day would progress I would feel more and more fatigued (especially after doing all the research on the Net instead of my actual work!).

A couple of days ago I went to see my GP who didn't know what on earth was going on with me, laughed at the idea of ALS, but did take my blood just in case. The twitches were happening in random places all over my body and although the eye twitching subsided substantially other parts of my body were twitching - arms, legs, belly, face. Sometimes I would also feel vibrations.

Then I started to test myself for strength - squeezing stuff, pulling, running, jumping, doing sit ups. And I started to notice how parts of my body ache. I would feel aches in my arms and legs. It freaked me out even more especially since I couldn't find a site which explained what muscle weakness actually is!!! Until now that is...

This morning, after an awful sleep, I woke up with a funny tingling sensation all over my arms and legs. I thought - that's it. I'm dying!

I still twitch and I still feel the tingling sensation but I'm not thinking anymore that I'm dying - thanks to this site! Why can't there be more sites like these? Instead every time something's wrong I always first get the worst case scenario answer!

I will now postpone going to a neurologist until I actually stop being able to pick up a glass, or walk properly.
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Postby SPRINGBROCK on December 17th, 2006, 9:34 pm

I sooooooooooo know what you mean. No dx for me yet, but some crazy symptoms, 12 weeks heaviness arms and legs gone. Muscle twitches still here, feeling of something in throat first symptom still there. Now my leg feels tight in calf.9 days still there. I am constanting checking to see if i can stand, run, check my reflexes, look in the mirror for wasting, by the way no even sure I know what it looks like. Driving my self crazy! THis started in August and my whole life revolves around it.
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