My Story - hoping it helps others w/similar symptoms

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My Story - hoping it helps others w/similar symptoms

Postby COSURF on April 8th, 2014, 5:59 pm

Hi everyone,

First, a big thank you to the people on this site, who helped ease my mind many times during the last 5 months. I wanted to share my story on this board, with the hope that it may help ease the mind of someone who has a similar progression. My story seems in many ways typical of the "average" BFSer, but is of course unique in some ways.

I'm a 37 year old male. In November 2013, my right index finger started twitching. Every 5-10 minutes, it would fire off for 10-15 seconds rapidly and then stop. It was pulling my finger down to my palm, sort of a "come here" motion, and would occasionally be strong enough to click my mouse button if I was on the computer. I thought little of it, have had muscle twitches before, and ignored it until it continued for a week or two non-stop. At this point I had started noticing other twitches all over my body, more random "one-off" twitches and rarely in the same place twice. I also had an odd vibration/buzzing feeling in my head and shoulders - usually at night as I was trying to sleep, often it would cause my vision to "flicker" (kind of like a bad fluorescent bulb). I started sleeping less well, waking up in the middle of the night and lying there buzzing and twitching. In retrospect I also had some very abrupt mental changes. I have never been an anxious person, have never worried about health issues, have never really been depressed, and in general have always been a happy and mellow guy. Suddenly, I was feeling incredibly anxious, occasionally depressed, and very worried that something was really wrong with me (again, all very different and abrupt for me). This last impulse led to Google which led to Parkinson's, MS, and "he who shall not be named" and led me to make a doctors appointment. My primary doc seemed unconcerned and told me to come back in a couple of weeks if not resolved. He very unhelpfully informed me of Michael J. Fox's Parkinsons starting with a finger twitch (I have since learned that it was a tremor not a twitch, constant and never stopped, and otherwise completely different from what I had).

The twitching continued. I also started experiencing other "generalized" issues - occasional dizziness, feeling clumsy, increased floaters in eyes, inability to focus and "brain fog." The anxiety, depression, and worry about my health became more all-consuming (during such times this website was invaluable). Primary doc referred me to a neurologist. Over the next few months I was had a bunch of blood work done (all normal), a brain MRI to rule out MS (normal), and neck MRI to rule out nerve impingement (I was told my neck looks "magnificent"). When all that was normal, my neuro begrudgingly did an EMG (also normal). It may be of interest to folks that my neuro also said the EMG would show it if I had ALS, even if I was years away from noticing any symptoms (in other words, he said it was a very accurate and sensitive test, even in the earliest stages of the disease). Neuro told me they'd done all they can, live long and prosper, and come back if things take a turn for the worse. He did not officially diagnose me with BFS, but said "I see people frequently who have very similar symptoms, we never figure out what is causing it, and it generally goes away."

I later had a cousin diagnosed with Lyme's disease, and although it is not common here in Colorado decided to get tested for that too. Test was negative, meaning I didn't have it, which was positive!

It is now April and I have been twitching for about 5 months. I will have a week or two where I think it is getting better (twitches only every 5-10 minutes), and then I'll have several days where it gets much worse (twitching basically constantly somewhere on my body). I have tried cutting caffeine, alcohol, gluten, and dairy, with no effect. I have tried acupuncture and massage (relaxing, but not helping the twitches). I have tried working out less (I have been an avid crossfitter for the last few years, working out a ton, and thought maybe that was causing it), with no effect. I have started taking Magnesium and epsom salt baths (also relaxing, but haven't stopped the twitching). I have started taking calcium and D3, with no noticeable effect.

Overall my mental issues are better - I have a better check on the anxiety and am sleeping better, but I still occasionally feel "off." I definitely think the mental issues are related to the anxiety caused by the twitching - it is such a hard thing to ignore when it is (almost literally) tapping you on the shoulder every few seconds saying "hey! It's me, Mr. Twitch! Don't forget about me!" That combined with the greater attention I pay to my body had certainly made things worse.

Currently, I am writing this with a twitchy thumb and finger, looking at the screen through an eye that has been twitching constantly for 4 days. But, I am confident that I don't have any serious issues and have mostly accepted the fact that this is just how I am now. It isn't great, but I realize that I am incredibly lucky in that my primary medical complaint is some annoying but totally painless twitches that do not interfere with my life. I think I am luckier than many on this site (who have to deal with fatigue, pain, and other more serious issues), and certainly luckier than those who are unfortunately enough to have one of the really bad diseases. All of that said, I am an incredibly curious person, and I am dying to know what is causing this. One day I was normal. A week later I was twitching everywhere, literally vibrating at night, anxious, and convinced I had some horrible disease. I do know that in my case, it was not anxiety causing the physical symptoms (although it certainly contributed), or the physical symptoms that caused the anxiety (although it certainly contributed) - something happened that caused all of this to pop up and start happening out of the blue. There certainly is a "vicious circle" element to it though - I twitch which makes me anxious which makes me twitch more which makes me more anxious.

Certainly, getting the most serious stuff ruled out as much as possible has helped me to just accept the twitching and not worry about it so much. While waiting for the "all clear" on that stuff, getting info from this site was a huge help as there is a great deal of misleading info elsewhere on the internets. I hoped that getting rid of the worry would lead to the twitches going away. So far that hasn't happened. I would of course like to figure out what is causing all of this, but I know if I never figure it out I can live with it.

So, that is my story. As I dealt with my issues, it was extremely helpful to read stories on this site that mirrored my own, so hopefully this helps someone down the road who shares my symptoms.

Thanks again to all of the contributors that make this such a great resource.
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Re: My Story - hoping it helps others w/similar symptoms

Postby ShawnW on April 10th, 2014, 8:37 pm

Thanks for sharing your story.
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Re: My Story - hoping it helps others w/similar symptoms

Postby Yuliasir on April 11th, 2014, 12:21 am

as for lighting flicker in the eyes at night, I have that too, noticed few years ago. I do my complete (I mean COMPLETE, 3 hours long and very nasty due to atropine drops) opthalmic check every two years since I am 40 just becasue I read that it is necessary in order to early spot things like elderly glaucoma etc., and the only thing doctors found was lack of proper blood supply to my retina due to neck issues. However my sight is still pretty good for 44 years lady (I only lost about 10% of near vision focusing ability becasue of age related presbyopia). So I believe that is a pure circulatory issue.
This year I decided to put myself on meds (and maybe even BADs) they prescribe, do massage etc. Hope that will help me :)))
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Re: My Story - hoping it helps others w/similar symptoms

Postby Protoolsnerd on May 14th, 2014, 4:06 pm

Thanks for sharing your story , mine is similar in so many ways. I like your use of " he who shall not be named " . Luckily with time that kind of eliminates itself. But i've been there with you , increased anxiety , sleeping issues, buzzing , twitching , increased floaters, positional finger twitch . Seems to be all par for the course with BFS. What is actually causing all this in us is still a mystery , but like the B in BFS says….BENIGN!!! That's my buzz word, I try to focus on that whenever any anxiety rears its ugly head. For me it actually took a low does of zoloft to control my anxiety , but i had anxiety issues before i had my BFS symptoms . Keep sharing stories, it makes us all feel less alone .


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Re: My Story - hoping it helps others w/similar symptoms

Postby Strive on May 16th, 2014, 1:06 am

Thanks for sharing your story COSURF. I've been twitching for more than 4 months now with a very similar story. I found your post particularly intersting because I too have never been an anxious person. I've always been told that I was laid back, easy-going, and I've never been an anxious person in any aspect. The twitches changed all that for me, and I became an anxious wreck for quite some time. 4 months later, with a clean EMG, I am feeling much better about the whole thing but my stress tolerance is definitely lower than it used to be and I find myself being anxious about all sorts of things now when I never used to. I really wonder if those sort of mood changes are part of the syndrome, or if it really just is the fact that the twitches are always there and wear on you over time.
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Re: My Story - hoping it helps others w/similar symptoms

Postby Xina535 on May 16th, 2014, 4:22 am

Hi - thank you for sharing your story. Also alot like mine. I have been twitching for 11 months now, and I've had periods of no twitching (or where I would twitch like a normal person) and then my fears of 'he who shall not be named' died down, and then recently, due to a constant thumb and index finger twitch, lips and a place on my face which has not twitched before coming on board, I'm taken back around for a spin down *** lane, so reading this really helps me put that in back in check: "Aha, yea Xina, it's been worse than this before, and what happened? It went away at some point. Ok it's back, so? This guy has the same thing, twitching in his hand and his eye for 4 days, so we're all good!"

So I really appreaciate your post. Thank you, and onward with the luck of having something benign!

Something else which I thought about while reading your post. I have talked to a few BFSers offline here, and we all agree that we wish we could be care-free, easy go lucky people, and we joke that those people make us sick sometimes, lol! No offense, just joking. We (me and the people I talked to) all have a history of anxiety though.

At first it seems like a shame how BFS (twitches) can turn someone like you who is care-free and who hasn't had anxiety issues before into feeling anxious, depressed making you change your daily life (losing sleep, exercising less, trying different diets)......but at the same time, if you look at this in a different way, I feel you do learn more about yourself, about other diets, about life, about personal battles and struggles, about your relationships that you have, which I believe is all apart of gaining exeperience and wisdom....and life! Makes you stronger, right? For instance, I have a very bad painful left leg and now pelvis, for which I will have an MRI at the end of the month, most likely due to pinched nerves. I don't give a s* about it anymore. It's like, "I'll get up the stairs somehow, watch me!" and I've cared less and less about it, while a person who I know who has something similar, cannot stop complaining or crying about it because it's like the only thing she sees or has ever had. I feel like shaking her and saying, "Listen, it's not *** or cancer, it will be fixed and pass, so shut it!". So that is how I feel and this is coming from me seeing the dark side of BFS and anxiety, I wonder what people who survived cancer or loss of limbs have to say to me. Tell ME to shut up, probably! LOL

And, I know Yuliasir, we shouldn't compare struggles, but I still feel like out of all of this crap that we deal with, we do gain strength (and gray hairs), even if we had to give up parts of who we are/were.
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Re: My Story - hoping it helps others w/similar symptoms

Postby German2 on May 16th, 2014, 8:53 am

Thank you also from my side for your story. Especially the information about the EMG was very helpful to me. I had just one and no neuro wanted to prepeat it, because every limb and even my back, face and neck was tested. But it was in an early twiching phase and I felt a bit unsecure about just one EMG...But in that case, I understand a bit the neuros, not willing to generate more costs, if no further effect (than my personal peace of mind, which is just for me important..). Really helpful info...
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Re: My Story - hoping it helps others w/similar symptoms



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