Hey all! I'm brand new to this board. My wife pointed it out to me and I have been reading lots of stuff on here for about a month and a half. I have just now found the courage to actually get on here.I am 36 years old and a pilot in the Navy. We have the unusual benefit of having Flight Surgeons available to us at all times. Literally, I can pick up my phone and call him or her up and get an appt within hours (very lucky I know). My issues started for me the week of Thanksgiving. I had started noticing a few small twitches in my bicep at night when I would roll over in bed. Didn't think much of it at first. However, I then made the mistake of using google and we all know what came up. I hadn't even known what ALS was until that point. I immediately went into panic mode and couldn't stop reading all that scary stuff. I am a self procliamed hypochndriac to say the least. No kidding, within the next couple of days, I have twitching in both my calves that continued to increase. I even noticed it when flying (wearing a G-suit I attribute being able to feel that due to the tight fighting gear). I became increasingly concerned and started driving my wife crazy. Seriously started to cause some strain in our marriage. We have a 9 month old daughter as well and just could not be myself. I retreated into this world of anxiety and almost depression thinking that I would not be around in a few years (crazy I know). I got into the flight doc, she did a quick neuro exam, saw nothing and thought it was due to fatigue and anxiety. After about a week, I went back to the other flight doc and explained how much this was weighing on my mind. He too did a neuro exam, thought it was nothing more than BFS but that is obviously a diagnosis of exclusion. Due to this affecting my personal life and mental heatlth, he referred me to neuro out in town and recommended an EMG. I HATED the thought of getting that test after all the reading I had done but knew it would take something like this to ease my mind. Needless to say, my appt was not for a couple of weeks and we were leaving to go back home for Christmas. I tried like hell not think about this but to no avail. All I could think about was my appt. On Jan 2nd I made my way in. I asked that my wife be with me and she happily did so. She was more than ready for me to move beyond this and get her husband back. The EMG was conducted on both my legs and arms. The test itself was uncomfortable and I wouldn't say very painful. Of course the tech finishes with the test, says nothing and leaves the room. In walks the doc. Very straight forward but not much for making people feel at ease. He asked about my sypmtoms, did a neuro exam, reflexes etc...(surprising he didn't ask me to do the walking stuff). He then administered the needle portion of the exam. Again, that was not very painful. Through this entire time he says nothing about how things are going. Once finished, he says that the nerve study showed nothing out of the ordinary. He looked at my chest and calves for the twitches, but of course they were not doing it when he looked (oddly enough my calves started twitching as I got dressed but were gone by the time I tried to show him). I kid you not, this is what he says at this time "well I'm not ready to diagnose you with ALS today." WHAT!?!?!? That's your idea of reassuring me I don't have this disease? He then says, unfortunately, if it were that, there is nothing I can do to slow it down or stop it. He then says, "Im not saying you're not having the symptoms you are describing, but there and what is called benign fasiculations (didn't come out and say I had BFS). He did say that having the symptoms I describe for over a month, he would expect to see some things on the EMG in probably 2 or 3 limbs, but found nothing in any limb. At this point, I'm feeling somewhat better, but not as good as I thought I would. He then said he wanted to see me again in 3 months. My face sunk immediately and my wife noticed this and jumped in to comfirm that if I had this disease, he would have expected to see something in the nerve study at which point he again said yes. One would think that this would be enough, but of course I keep going back to what he said, how he said it, (did I mention this or that) and then of course the dreaded follow up in 3 months. I took the results back to my flight doc. And he looked them over. I spent way too much time looking at the *beep* results for each limb and noticed that for a couple of the variables they looked at in my left arm and right leg were slightly out of the range that were also on the results (these numbers were highlighted). However, in the final remarks section, the neuro said that this was a "completely normal nerve study on all four limbs." My flight doc, who obviously is not an expert on this test, looked at that and said he didn't consider the results abnormal. They typically look for huge outlyers, but the bottom line is a certified neuro found nothing abnormal and this should give me the reassurance I need to move on. Well...sigh....it hasn't. As my wife says, I'm always looking for that last "well if only....." It's never enough. As for the follow up, my fight doc said 1. "they get a lot of money from us and 2. not uncommon. He probably doesn't even want to do another EMG, just wants to see how things are going to be sure on the odd chance he didn't miss anything (the neuro did verify this because I asked him it were normal for him to do that follow up following an appt where everything was normal. He said yes, he just wanted to make sure there wasnt the slight chance something was amiss, though not likely). Oh and he did say walking out the door that "I'm not that worried at this time." But again, I hang on to every *beep* word such as "not" and "this time."The twitching is still prevelant as ever and I even have them in both my quads. Mostly just above my knees to both the inside and outside. Sometimes in my upper quads as well as hamstrings and the occasional (but getting more consistent) in my forearms, biceps, neck at times and even cheek and feet. Tingling and "crawling" feelings on my calves and shins too. My wife is at her wits end with this whole thing and I find great comfort on this site and with what others have to say.I know this is a lenghty post. I'm new to this and it took a lot of courage to just "get it out there." I hope that someone will take the time to read and possibly let me know if anyone too has the twitching on their quads around their knees. I don't know why but I worry about those the most (until they die down for a bit and I start thinking about the crazy ones in my calves). Any words of reassurance or experience would be great and I will provide my own insight to posts by others as well.Thank you all in advance for your time as we all continue to instill encouragement in each other. Mike
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TwitchMeSweetheart
Well-known member
Please try to not to dwell and focus on loving your family, you are fine. I am coming up on 7 years and wish I could get back all the worrying. You can search my whole Neuro history as well. Though I am not a Navy Pilot I suspect you are a bit of a very detailed and focused oriented person who wants answers and reassurance to everything, I am the same way. I remember point blank 5 years ago staring at my Neuro (a neuromuscular specialist) and saying, "It's just so hard to believe there is no answer for this" and he replied "I know, I wish I had more answers I could tell you it would be easier for me too and the 2 or 3 of you I see each month".Wise words indeed.
You seem to have a very unconfortable doctor like I did. But the results clear you, try to be positive, you are ok! DOn't let the doctrs scare you, search my posts of how they scared me, because they didn't find anything but used all this wierd words that do not exclude anything 
Welcome Mike.You sound very much like me and very much like a BFSer. With your clean EMG, you should rest assured that this is not harming you. I twitch 24/7 like a popcorn machine. I get plenty above my knees and in my quads especially while standing. I just feel them moving, popping, tugging, all day long. I started filming my twitches a while ago and posting them on here because I find that it helps people identify that others have this too and we are all fine. I've been twitching away for almost 20 months now. I've been seen by the best (Mayo Clinic and Mass General hospital). They are not concerned in the least. They call it neural hyperexciteability but have also used the term BFS many times. Here are some videos of my twitching to show you that you are not alone....I hope this helps to calm your anxiety.-Matt
Thank you all so much! It's amazing the amount of support and reassurance you can get from people going through the same thing yet you have never met. I hope to be able to provide the same as well. I am more than happy to answer any questions about what the docs have said to me, what my appts have been like and what I have and continue to go through. I hope to be a resource for someone out there that needs that extra "push."Mike
what I have been told privately by a neurologist is they tend to avoid using conclusive wording because of malpractice fears....and also because most neurologists deal in diseases with unknown causes, unknown cures, and unknown modes of action. But here is the bottom line....your EMG was clear, you are young, you have no clinical weakness, you do have some anxiety and hypochondria so everything points to BFS. Muscle twitching is a symptom of a large number of illnesses, vitamin deficiences, withdrawal, fatigue, anxiety, so on and so forth...you have chosen to zero in on a scary disease that is pretty rare. My best advice that I have been earnestly following is to keep reading some of the posts on this forum, stop googling symptoms, get rest, learn to take care of your body and mind, and as much as you can let go of the worry.Your case sounds much more like BFS than you even realize.
SecretAgent007
Well-known member
Mike,First of all, thank you for your service. I come from a military family myself and my wife is in the AF Reseves (just made major). Anyway, the first step is to acknowledge that your stress and anxiety levels are a major contributing factor. I'm not sure if you're aware but the Dept. of Veteran's Affairs is currently studying the positive impacts that acupuncture and meditation have on PTSD symptoms. BFS has many common symptoms with PTSD including twitching and jerking muscles. The next step is to take actions and make changes to your life style to address your stress and anxiety. Meditation and acupuncture worked very well and continue to do so for me.You may also need to look into diet and environmental factors. Emotions and anxiety are one way to stress your body to the point where the nervous system acts up, but toxins and allergens in your diet and environment will stress your body just the same. It is not widely advertised, not even in conventional medicine, that poor digestive health can lead to the formation of new allergies (both food, drink, and environmental). Your military medical doctors will most likely send you away with a clean bill of health, but there are options available to balance your system out and achieve normalcy again.
Oh, I forgot to add, I do have twitching in the muscles around the knees - not as continuous as in the calves, but not rare. Even my husband has twitches there quite frequently - and he does not consider himself a BFSer (he never noticed his twitches until my obsession started).
RTW,I by no means had the intention of causing anxiety or worries in someone else. I do not know if my neuro is a neuromuscular specialist or not. For myself, and where I'm at with this right now, I don't think that would matter. I would still probably be worrying like I do even if he were the latter. He has however dealt with ALS in patients before. After consulting with my flight doc after my visit with the neuro, I am convinced that his intent was not to do another EMG in 3 months. I think he was just looking for a follow up to see how things were going, and my flight doc doesn't think there is anything unusual with that. I have even seen some posts on here where neuro's have wanted a follow-up with the idea that nothing was going to be different, just being cautious and covering their six. I completely understand the being scared part of this. I had a great day yesterday with all the support I have received here yet went to bed and woke up with this on my mind. I want to re-iterate that my neuro said he would expect to see something on the EMG at this point (in 2 or 3 of my limbs at that) but nothing was found in any. Like you, my EMG was conducted about a month and half into this ordeal. I'm not sure that having the EMG in the first place was even a good idea. It was not even "prescribed" to me because of my sypmtoms, only for the fact I couldn't let this go. My particular neuro had quite a few bad reviews due to communicating with patients. I do, however, think he was professional and thourough. I know you are still scared, just like the many of us here. Try and take solice in that after 10 months of this, you would most surley have very noticeable weakness, and your EMG was normal.....we need to be ok with the fact the we are in fact....ok.Mike
I think we could do with a well-informed vet in here to clarify this issue of EMGs and the possibility of their being done 'too early'. I have been led to understand that if you are symptomatic at the time of the EMG - i.e. you are twitching - and the EMG is clear, or picks up only fascics, then you can rest assured that there is no MND present and therefore the EMG can't have been done 'too early'. I may be wrong, but hope I am not. As I said, a well-informed vet may like to step in here and clarify.And Bosley23 (Chad), you should stop telling people that they're "definitely alright". You're not a neuro, for heaven's sake, and not even neuros give 100% assurances. All we can say is that X's symptoms are highly suggestive of BFS, or that that they almost certainly point away from anything sinister. But on no account can we tell people that they're "definitely" anything. If you were a doctor and you told someone this, and they then went on to get ill, they'd sue your ass off.
Seepi27,While I am a vet, it by no means makes me any more knowledgeable about this stuff then anyone else. And to those that have made comments about my serivce, that is greatly appreciated but not needed. I look at it as a job just like anyone else, but again, thank-you. I only have some pretty sweet access to flight docs due to the fact that I fly. And because it's their job to keep us in the air, they take it very seriously when something is weighing on our minds because they don't want someone in the air in a dynamic environment if thier head isn't fully in the game. I do honestly think that reason alone is what led to an EMG so soon after my complaints. He even told me afterwards that "hopefully this provides the closure that you need to move on with your life." And even after my second appt with a flight doc, he saw absolutely nothing that would warrant sending me to a nuero other than myself. And while he knowingly isn't a specialist with this type of stuff, they are well trained, and know if something goofy is going on. I do agree with your statement about what a clean EMG means. But again, it's only my opinion. The problem is, with people like us, it never seems to be enough. I am always looking for that "something else." It's a terrible mind game to play with yourself. I do believe that is why we are all here. We are looking for support from others that COMPLETELY understands what each of us is going through. But the truth of the matter is that this all starts with ourselves. We need to truly BELIEVE in our own minds that we are ok, and only then we can move on. Easier said then done for sure.
Chad and Bobajojo,You both have been great, and I appreciate you taking the time to respond. While I understand where Seepi is coming from, I disagree. I find it very comforting to hear from others on here (that are going through the same thing), that I am ok. And I would like to think that we are all responsible enough to understand we are not doctors, and should not replace sound medical advice from our doctors based on what we hear from others. However, It's positive reinforcement like this that helps my mind work towards convincing itself that I am truly ok. And it is only when we win that battle in our minds that we will be able to truly move on past this. The mind is a very, very powerful thing of wonder. I don't know how anyone could get by this if they continue to think that there is small chance that everyone is wrong and "I am really sick." Unfortunately, that is exactly what most of us do. Which is why I believe this is such a powerful tool for us to cope, and move beyond this. I have no issue what so ever with someone telling me "dude, you are totally fine." That is exactly what I need to hear.
Seepi27,I apologize, I wasn't sure that you had meant "BFS vet." If that's the case,then I am an "infant" in all of this. I am more than happy to go over in detail my experience thus far. From symptoms, to appts, what docs have said etc...I do appreciate your insight. Feel free to message me if you would like to keep the conversation more private. Of note, I think reassurance is exactly what most of us are looking for in the end.Cheers,Mike