Widespread fasciculations

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Widespread fasciculations

Postby monr905 on May 26th, 2009, 2:42 pm

I am a 37 year old guy that has had the worst two years of my life. About (a month?) ago, I started to notice muscle twitching in my right bicep. I thought it was "cool" and didn't think anything of it. Well, I started to notice that my right eyelid was (getting stuck? twitching?). I did the unthinkable!

I started to do research on the internet. I am used to looking up different medical problems because as I said two years ago, my mother was diagnosed with adenocarcinoma of the right upper lobe of her lung (Lung cancer). She had a lobectemy and she has been in remission ever since. My dad died in Dec 07', I found him in his room a victim of a massive heart attack. Then my mother's shaking started. I don't want to bore you with paragraphs of my differential diagnoses (hahah I am a police officer and not a doctore, i swear!) She was finally diagnosed with Parkinson's Disease along with PolyMyagia Rhumatica. (PMR?) (taking a breath) (ok...) She is doing better. My x-wife and I decided back in June of 08' that were were going to try and get back together and it has been a tumultriuos ride. My point is that I have been under an EXTREME amount of stress. As a cop, I see live, eat and breath stress for lunch. But, over the last two years I have been on overload. Anyway, I looked on the internet for the cause of twitching and found A....L....(you know). I know I am trying to be humorous, but I am scared out of my freakin mind. Aisde from the stress, the only thing that I can think of that would cause anoything like this was the fact that I aggravated my mid to low back again by over exerting and picking up a very heavy bag a month ago that I had no business picking up (back injury? Cause?)....

As of today, fasculations are mostly in my right calf, and thigh, sometimes left, right arm, abdomen, right shoulder and right eyelid and ONCE between my left thumb and index finger(that freaked me out! ). My recent nightly ritual of a glass (or two ) of wine and my 5mg of diazepam seem to slow them down, but they seem to be getting worse and so does my anxiety. I don't have any weakness that I know of or any other signs but am deathly afraid that I am not going to see my kids grow up. My fasculations happen many times a day for about 5 to 15 seconds at a time.

I went to the doctor this Monday and he told me that most people with "Adam Lincoln Samuel" (cop lingo, guys) come in looking like a "ragdoll" and eyelid twitches made him believe that I am not managing my anxiety. (right? ) He told me to schedule an appointment with him in 8 yes... E I G H T weeks and we would evaulate from there. I went home twitched a bit and called him back to have him give me a referral to a neuro appt.
I have never been more nervous in my life!!!! I have always been OCD and a hypochondriac, but the twitching is no omnious! I am doing pushups, running, opening peanut butter jars after tightining as hard as I can, trying to caryy extra loads of plastic grocery bags with one hand, just to keep proving to my self that I am not losing muscle strength.

I don't know why I am rambling, I guess I am just hoping that someone that reads this post will help reassure me this sounds like BFS. I have never been the type of guy to really take day by day and enjoy it. I tell ya! The last two years changed me and this experience, if I live through it has really metamophisied me.The one thing that I noticed on these forums are the lack of successes after these, "Oh my god, I'm dying" posts. I promise that if on 5/26/10 I am healthy, I will repost here (I already set my BlackBerry ) If there is one thing I need righht now is LOGICAL hope.
I arrived at the neuro on Friday and I have to say that the 10 minutes that I waited in the waiting room seemed like years! I went in and the doc interviewed me and went over my history. He did a semi-quick physical exam, push this, pull this, step on the gas, etc. He then told me that before we went any further, I did not have ALS as I would have muscle weakness and wasting that I would not have to look for, it would find me. He did an exam with somthing that looked like a stun gun on idfferent muscles in my right hand and arm and told me that the pins and needles feelings in my right hand were from a mild carpal tunnel syndrome. Then came the EMG, I have to say that it was pretty much painless and he tested my arms and legs were most of my fasciciulations happen. He only saw one fasciculation on my thigh, not during the EMG and none during the EMG. He explained that the fasciculations with MND happen after muscle death. He scheduled me for a followup in one month to do some imaging for my possible back injury and sent me for thyroid bloodwork. He skipped the Lyme test, because I guess ticks in Rochester, NY are Lymeless? He diagnosed me with BFS and told me to get my anxiety under control.
I still have been getting twitching over the last week and even noticed more in my left thumb. I am trying to accept the benign diagnosis, but it is hard to go from twitchless to twitching all the time and accept that it is normal.
Joking aside, these widespread fasculations are ruining my life. Help.
God Bless.
Anthony
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Re: Widespread fasciculations

Postby twin2 on May 26th, 2009, 3:12 pm

Welcome Anthony. You are right. BFS can certainly ruin your life if you let it. I've been experiencing this for 5 months now. My anxiety is a bit better due to medication, but I still worry that I am going to be the one and only ALS diagnosis on this board. No, I don't have any weakness or atrophy. You would think that and a clean EMG would set my mind at ease permanantly. Nope.

The fact that this condition is BENIGN is something we have to remind ourselves of every time the symptoms are driving us nuts. BFS does totally suck, but the bottom line is, it is in no way able to morph into ALS. It is a separate condition. Yes, it is annoying, and may last for years or even a lifetime. But you will have a lifetime to deal with it, unlike a degenerative neuromuscular disease.

Every time your anxiety gets the best of you, repeat the above info to yourself. Repeat it until you believe it. It is the truth. It just takes a while for it to sink in.

Good luck!

Becky
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Re: Widespread fasciculations

Postby highpriority4 on May 26th, 2009, 3:24 pm

Anthony,

Your neuro is right...you would know if you had the big scary stuff. As one very special person told me when I first came to this site, "The bottom line is, no one that makes their way to this site has ALS, because those who do have it, know that something is very very wrong and their doctors soon confirm this."

I know how you are feeling right now...I still fight the anxiety now & then...but it has gotten easier for me. Everything you describe sounds every bit BFS. And dont feel bad...we have all done all of the fun strength tests. Hey, at least you havent stood in front of a mirror for hours on end smiling just to see how often your cheeks twitch!! (GUILTY!!) :P

You may try the chiropractic road if you have had a back injury. Ironically I believe that is where mine stems from...a car accident that injured my back. Anyways...it helps me to get regular adjustments but it takes a while to kick in. Most of all...you have to find a way to control the anxiety. Once I did this, my twitching calmed down alot...and now when I do twitch...I just really dont care. :D Remember, clean neuro exam = no ALS. After I had a good neuro exam that was perfectly normal...I opted out of an EMG and my neuro agreed it wasnt necessary. You have had one...and it was clean.

I hope this helps a little....you have seen a family doctor...and a neuorolist (who did what he was supposed to do), neither of which have given you a death sentence...you are just fine. :wink:
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Widespread fasciculations

Postby wjjw on May 26th, 2009, 4:58 pm

I still have been getting twitching over the last week and even noticed more in my left thumb. I am trying to accept the benign diagnosis, but it is hard to go from twitchless to twitching all the time and accept that it is normal.
Joking aside, these widespread fasculations are ruining my life. Help.
God Bless.
Anthony

Really? Your left thumb? Don’t be surprised when it hits your right thumb, left foot, both calves, chin, back, abdomen, scalp and other places you didn’t know you had muscles. Your onset sounds like classic BFS. Four years ago my eyelid went crazy and soon after I had dancing fingers and twitches in all the places I just mentioned. It took over 2 years to reach a steady-state with periods of non-twitching. So be patient.

Do yourself a favor and get used to this new condition ASAP and quit worrying about it right now. I know it’s hard to believe, but what you describe has been described by thousands of people, and you fit the pattern perfectly. I have friends and family who are police officers, and I know you guys have more important things to worry about. Take this advice and you’ll be fine.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Widespread fasciculations

Postby jro on May 26th, 2009, 6:44 pm

Welcome to the Board,

I am a frequent poster and had the sudden-onset widespread twitching start in July 08 (went from eyes, to calves, to feet, to face (including tongue, cheeks, and lips), to trunk in less than two weeks. Now I've twitched everywhere a person can and have probably had more testing than most on this board. I have no firm answers or diagnosis but I do have a decent educated guess about what causes all this and how it relates to stress. This is not my original idea by any means but for someone just hit with this I think it helps to know the possible theories so you can have some idea of what might be happening. I think the best theory out there is that a person under stress becomes more susceptible to immune system problems and this leads to the body producing antibodies that irritate the nerves thus causing twitching, tingling, etc. Sometimes a virus may be an intervening factor and the virus could be one you had no other symptoms of. These are just theories but there is proof that people twitch and it is benign and there is proof that antibodies cause twitching. Antibodies from twitching people have been put into mice and the mice twitched. I take benzos like you do that help. I take Klonopin .5 mgs twice a day.

I'm glad you found this board. Knowing that there are others and being able to share with them as I journey through this is a big help to me. I hope it is to you too.

jro
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Re: Widespread fasciculations

Postby fox2run on May 27th, 2009, 7:47 am

Hehe

Welcome on board, police-man. It sound just like the many stories here:

1)Stressfull period
2) Twitching
3) wonder about twitching
4)internet-"oh my God, im dead"
5) family-doctor
6) neuro (usually own choise - not the family-docs)
7) clear result
8) clear result not understood
9) drugs
10) counting time: first weeks, then months, then years.

c ya around for sure.. :wink:
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Re: Widespread fasciculations

Postby monr905 on May 27th, 2009, 11:32 am

:D :D :D :D :D :D

You guys are the best!

Thank you for taking the time to reply to my post with such supportive information. God knows that there is a wealth of negative information out there!

Well - I went back to karate with my youngest son after taking 1 year off and gaining 35 pounds ... :shock:

I realized...drumrolll please.... I am out of shape :oops:

Still twitching like a madman, but was able to perform all of the pushups, situps, etc.

God Bless!
Anthony
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Re: Widespread fasciculations

Postby highpriority4 on May 27th, 2009, 2:03 pm

[/quote]
Really? Your left thumb? Don’t be surprised when it hits your right thumb, left foot, both calves, chin, back, abdomen, scalp and other places you didn’t know you had muscles.

Or all at the same time! Now thats fun.... :lol:
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Widespread fasciculations

Postby bfshopeful on June 2nd, 2009, 10:06 am

I am in the same boat as you. Stress, Stress, Stress.

Divorce
Bad Divorce - back and forth fighting over everything
Business going down the drain
Figuring out how to live on my own after 10 years
etc etc

My problem is not thinking I have ALS. Beleive me I have to close friends of the family that have it. Both in their 80's and their first signs were they thought they had a stroke. And I don't mean panic attack stroke. I mean could not talk, could not move leg. Not numb, not tingling, not sore. It hits like Mike Tyson and knocks you out just as quick.

My problem is dealing with the annoying twitching. It's like the second I forget about it, it's right back. Never any real releif except for when I sleep and when I am on kolonopin.
"It's mind over matter. If you don't mind, it don't matter."
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Re: Widespread fasciculations

Postby monr905 on June 5th, 2009, 7:34 pm

Well - Things have gotten a bit worse for me, but I keep telling myself that the neuro exam, emg and exam were all clean! I just started karate with my son after being inactive for about 1 1/2 years and I don't know... My sore legs, combined with the fasciculations in my calves and legs and become MUCH more frequent. Believe it or not, my eyelid twitches are the only thing that keep me grounded as I tell myself that those are not a sign of you know what. I have been finding myself fatigued, but the doc also started me on 36mg of Concerta for my Adult A.D.D., which I know can make BFS worse. I guess I have all the answers, but both thighs being sore after working out at karate two days ago, subsequently causing a "sensation" of difficultly walking, fatigue, etc kinda freaks me out.

I'll keep updating. My next neuro appointment is near the end of the month. If I could have a completely twitch free, strong day, I swear I would feel SO much better!

God bless all!
Anthony
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Re: Widespread fasciculations

Postby SuziQ on June 7th, 2009, 11:26 pm

Anthony,
It is VERY common for a bfs'er to have unbearable stiffness and pain after a work-out, especially when we try to be week-end warriors. Whenever I get the usual post-work-out muscle tightness, it ALWAYS feels much more painful, rubbery, and twitchy for a WAY longer recovery time than I ever experienced when I was young. What used to take a day or two to return to normal now can take up to four-five days.

I attribute it to my bfs, because so many others have shared this complaint, but also to middle age (groan,) and not being consistent with work-outs. When I exercise regularly, this symptom, and ALL of my symptoms are significantly reduced.

So, yes, expect that leg to feel wonky, tremory, twitchy, shaky, weak, and perhaps even tingly. It's all part and parcel of this goofy syndrome we all seem to have acquired. If you'd had that bad disease, you wouldn't have been able to DO the karate.

I hope this helps to ease your mind.

Blessings,
Sue
Last edited by SuziQ on November 23rd, 2009, 11:32 am, edited 1 time in total.
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Re: Widespread fasciculations

Postby Nicko on June 9th, 2009, 2:45 pm

Hi Anthony,

I sympathize with your experience. I was diagnosed with BFS in 1990. I went through the emotions that you are experiencing. I didn’t believe the neurosurgeon and even years later I still thought that I had got a horrible progressive illness.

However, I have learnt to live with the symptoms and I now know that my symptoms are much worse when my stress levels are high. My advice would be just go with it and try (hard as it is) to accept it and life will go on.

I’m still here 19 years on, my symptoms have been there throughout, most of the time pretty slight but there have been times that they have been really bad. Just last night I was woken at 4am by one of my thigh muscles twitching. This kept up its persistent activity until about 9am and has been off and on all day today. This was a pain in the backside but I know that it will die down again. Stay positive and try not to dwell on the negative.
Regards

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Re: Widespread fasciculations

Postby imaginarygirl on June 9th, 2009, 10:18 pm

Anthony

You have to come to the right place. This place can be a great support system especially when you start driving your friends and family crazy with the "twitching talk".

By the responses you received you should be feeling reassured that these feelings you are having are just that feelings and not something sinister to be fearing.

I was told by my neurologist that the people she sees that have "A Loco Syndrome" don't even think they have it. They are clueless to what is happening to them and don't self refer themselves to a Neurologist. She also told me that they don't even notice the fasiculations until the doctor points them out to them.

Enjoy the time you have with your son. I know this "stuff" kinda puts life in perspective. Makes you truly appreciate what really matters in life and looking back at what one thought was bad times but really was just life being life.

What helped me was a combination of therapy, family and meds. Get away from yourself and spend more time with the people who love and support you. Try doing some of the things that brought you joy. Get back into the rhythm of life. When you start getting caught up again in the thinking, focus your attention back to something wholesome like your son. Your relationship with your son will be the best medicine. Believe it.
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Re: Widespread fasciculations

Postby edado69 on June 18th, 2009, 2:43 am

So much similar to my case. Age of onset and bit of everything. Well, better not to think to much about twitching or not twitching. It is now 26 months that I twitch and just yesterday a I had a series of powerful twitches to my right jaw (first time ever) and since last night my right triceps (first spot) is twitching quite vigorously and often.
In the other hand, I am training regularly and my performances are good as ever.
2 EMGs, 3 neuro exams and many press-up after...Still the same.
Ah! One difference: you get used to albeit it may be still upsetting from time to time.
You are fine. I think the neuro, in few words, told you already everything about what we know.
By the way...Most of the stories here are very similar to ours to.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Widespread fasciculations

Postby baybay123 on June 30th, 2009, 11:02 am

Hello,
I am new here. 47 year old female that started "twitching" about 4 months ago. Eyelid at first, then calves and now just about every part of body. Not all at once, but can happen anywhere. I saw my physician who thought it was funny that I was thinking ALS, but just said it's probably anxiety. Made my own appointment to see a neuro. He said he's 99.9% sure it's NOT als, and that it's BFS. Just relax and realize that it's nothing serious. He even said that he suffers from it and does nothing about it.

Easier said that done... countless hours of internet searching, and my stomach is in knots, anxiety is high and I can't seem to just relax with this thing. I go to bed at night and the twitching is in my calves. It reminds me that it's there and my mind starts turning and then more internet reseaching.

I'm finding that I just need to hear from folks who have this and can help me deal with the anxiety that it brings. Does anyone have any ideas on how to "forget" or at least deal with the twitching? Thanks!
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Re: Widespread fasciculations

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