New to Forum, Testing - BFS?

I'm new to this forum and am in the process of being tested (MRI on Monday and EMG next Friday). But I'm wondering if this sounds like BFS to you all. Here are my symptoms:* Started with leg cramps in the backs of my thighs and calves and occasionally in my forearms and triceps in February (5 months ago).* Then I noticed fasciculations in my right calf in April (3 months ago). It freaked me out because it was like electricity going through my calf. Multiple dents going off simultaneously, nonstop.* Then in May (6 weeks ago), I noticed it in both calves with cramping in my right calf only.* Now, I have several twitches a minute all over. Every muscle has joined in. My back, abdomen, shoulders, neck, chin, both calves, feet... you name it. They are non stop but they are painless. I don't get many cramping anymore, just twitching. It's been about 3 months since I noticed my first fasciculation.* When I try to go to sleep, the twitches turn into jerks. My shoulder will jump, my jaw will pop open, my hip will jump... etc. It's really tough to sleep some nights.* Lastly, and I'm not sure if this is related, but the back of my neck has been cracking a lot lately. I've never had that happen before.* I have no weakness whatsoever and no atrophy. My neuro exam was fine except brisk reflexes (on both sides which I guess is reassuring).So, does this sound like BFS to you all?-Matt

Yes it does to me, from what you have written, and WO any weakness. Hopefully your MD wil confirm this. SOunds like you are on your way with the MRI and EMG scheduled. Do share your good news, best of luck, good luck next week, you will be fine.

Hi and welcome, I agree with Runningbear, it absolutely sounds like BFS and I firmly believe that your clean MRI and EMG next week will provide your proof that its nothing sinister going on. I share many of you symptoms. My twitching is kind of background noise to me for the most part but still quite annoying and noticeable, but the cramping you were talking about...this has been one of my symptoms that is very hard to ignore. I dont usually refer to it as cramping because I think of cramping as being painful, but this is more like a tightning sensation, I feel it on my arm muscles and leg muscles, and occasionally on my back. All the muscles still function and I have no clinical weakness either, but when they do this, it can be rather uncomfortable feeling and as I said, difficult to ignore and not think that there is something more sinister going on to cause it. But all tests were negative, so I guess I am doing it to myself some how. Your tests will go fine, and you are going to be fine, promise. We are here if you need us.Take careRobynn )

Thank you both for your replies. My understanding from my neuro was that the EMG next week won't really tell him much. He said that it would really be a baseline and that we'd have to redo the test 3-6 months out (depending on if my symptoms worsen) and see if any changes are detected in the test. Did I understand that right? ... or can the first EMG actually rule things in or out?I've read that there seems to be a connection with long time anxiety and BFS. I've struggled with anxiety all my life. I'm 38 now but I started with panic attacks in college and have had generalized anxiety ever since. The interesting thing is that I'm an identical twin and my brother has not had a problem with anxiety and has never experience twitching. Although who knows. This is very new to me and he may have it at some point.

Saying that anxiety caused this condition....well thats a bit of a touchy subject around here. I have had serious issues with anxiety since I was a little girl,....but in saying that, my anxiety was very much under control for a good 10 or 12 years, prior to my BFS situation. I did have two separate virus issues within 6 months prior to my BFS, one was H1N1 (was told but not tested) and the other was some kind of stomach virus. So was it my long standing issue with panic disorder that I was dxsd with as a kid, or was it one of the viruses I caught??? Who knows, some days I think one, some days I think the other. Does it matter,....not really...either way, I couldnt get one doctor to care about my symptoms. They would run tests, then roll their eyes.. it sux, but I guess thats just the way it is.I would venture to say that several if not many here, had issues with anxiety prior to this, some didnt and maybe had a trauma (physical or emotional) of some kind...Some were just living their life and got hit with this.... Whichever, whatever, what Raindog said is rite, Anxiety will absolutely make this condition much harder to deal with, thats the one thing we all know for sure..Please take care and post as much as you want or need for reassurance.Robynn )

I'm having one of those nights. It's 4AM and I can not sleep because my body it twitching. My question now is, how frequent are your twitches? For me, I'm getting several at the same time every 1-2 seconds. They are happening in the backs of my calves, backs of both thighs, front of both thighs (just above knee caps), butt, back, both triceps... etc. I'm so scared. This is not normal. I can now say that the twitching is getting worse. It's been 2 months since I first noticed a subtle twitch in one calf. It's only been one month since I noticed them outside of my legs. Now, tonight, everywhere and they just won't stop. Like I said, every 1-2 seconds. What is happening to me? My EMG is friday and I won't get the results until the 26th. It's going to be a long 2 weeks.

My calves and insteps twitch every few seconds. The random ones twitch every 10 seconds or so. Counting them up, its in the 10's of thousands every day. Didn't start out that way, but after about 9 months they "peaked" to what they are today (month 26 and counting!). I am assuming a technician is doing your EMG and not a neurologist. Otherwise, you would get the results immediately. In any case, everything you are describing fits bfs perfectly. Try and ask your neuro for some meds to try to help calm them. Right now I take clonazepam and baclofen which helps. But I tried many others that didn't work for me, but did work for others. During the EMG, ask questions.

The twitching in my cavles is 1-2 a second 24/7 (sometimes more). The other random spots are probably every 10 seconds or so but they get much worse when I worry and/or think about them all the time.

I go for the official results of my MRI and EMG/ NCS tomorrow. I had the EMG on July 15th, the day before I went on a week vacation with my family. Just before leaving the office, the Neuro told me to relax because although they did pick up fasciculations in my calf, nothing seemed consistent with MND. She said that she would send the readings to the computer lab they could possibly learn what is causing the twitching and cramping. But, we'll see tomorrow. I'm so worried. At this point, my twitching is non-stop and all over. As I type this, my back, shoulders, calves, neck and palms are all twitching. Not the typical twitch that I was used to the first 38 years of my life, these are like lightning bolts firing down every muscle. I also have strange headaches, neck cracking, and my right ankle gives me problems when I first wake up each morning. When I go down stairs, it is stiff and painful. But not weak. I'm about 2.5 months into this twitching nightmare and no apparent weakness anywhere but it's so scary just waiting to see if my muscles weaken one day. That's no way to live each day. So, I'm going to a mind-body institute in 3 weeks which focuses on positive thinking, nutrition, exercise, etc. I'll share the results of my MRI and EMG/NCS tomorrow in case any of this sounds familiar to any of you. -Matt

Just returned from my neuro appt. The MRI of my cervical spine and brain were clear. The EMG/NCS detected fasciculations in my calf but everything else was normal so he said it "pretty much rules out ALS". However, he wants me to follow up with him in 3 months for a clinical neuro exam and then do another EMG in 6 months to see if anything changes. He also put me on a medication called Gabapentin (300 mg 3x daily) which I believe is an anti-seizure medication but can also be used for nerve related disorders. Has anyone had any experience with this drug? I'm one of those people who never likes to take meds but if it will control my twitching, I'm willing to give it a shot.He then said to call him if I notice any weakness or balance issues, which to be honest, had me thinking "why, do you think it's still possible that this is you know what?". But from what I've read on these posts, I think I'm pretty much in the same boat as many of you. First, I noticed twitching in my leg and didn't think anything of it until I googled it. Then I panicked and that somehow made the twitches spread all over and become stronger... and last for 3+ months. Then I went to a neuro who pretty much cleared me of anything sinister (although he had a funny way of doing it..."everything looks good... but just in case you start wasting away here's my card."), and finally I'm left waiting it out until my 6 month followup... hoping that I don't accidentally trip over something and end up in a psych ward.

My first neauro said the same thing pretty much, he said you dont have al# but we can do a muscle biopsy if you would like. Then he would say come back in a month or call sooner if need be. It always kept me on edge. Then I said I'm still worried about al# and he said this to me, "I bet your life you dont have it, I'm not betting my life but I will bet yours" Then he laughed and walked out the door. So I got a second opinon and he did a second EMG and said "Congradulations, you have no nerve damage, go out and celebrate with your wife" Then I asked him If I needed a follow up visit and he said only if I wanted one. You could always get a second opinion if need be, just to clear your mind, it helped me some. But I won't lie to you, I still worry. Congrats on your clean EMG and MRI, enjoy your life again and try not to give it a second thought. I have never taken the Gabapentin but I have read where alot of BFS'rs have, use the search function and it will bring up lot of hits. I am going to ask my Doc to let me try it...

Gabapentin (Neurontin in Europe), carbamazepines (like Tegretol or the new one, Trileptal) and Pregabaline (Lyrica) are options currently available for controlling fasciculations, however indirectly and thus results vary signifficantly. I know some people who were relieved much after using Gabapentin but for me and some on this forum (I think it was Nocturniscope?) it worsen the sensory stuff and add more hotspots. But I am considering to take it again and increase the dosage slowly. 300mg 3x a day sounds good, let us know the results!

Thanks. I was prescribed gabapentin 4 days ago but haven't started it yet. I think I'll start it today and will share my results. I have not had many sensory symptoms lately, just twitching 24/7, all over. I get them in multiple spots at the same time like popcorn popping. I would bet that if I counted my twitches, it would be in the tens of thousands every day. Just random popping all over.

One more thing... The only reason I haven't started the med is bc I'm fearful of adding new symptoms. But my twitching is zoning of control and worrisome that I will definitely start it. Crossing my fingers. I would do anything to get my life back!

BobJazzy: Neurontin (gabapentin) can increase your symptoms, this has been reported many times - OR it can decrease them, also reported by many. I have never had sensory problems until I started it. So do not be scared if your twitches do not stop rather than change their shape. The results should be stable after week or two, you have to hold on.I would personally recommend Tegretol, this has been proven as very effective in benign fasciculations, its sodium blocker which, in layman terms, just stabilize the membrane which is probably hyperexcitable in BFS.

May 14, 2011 was the first day I noticed fasciculations all over my calves. Here I am 7 years later. Proof that this is benign. The twitches have gotten much worse over the years as my elbows crawl with twitches all day long as constant as my calves but I’m living a happy NORMAL life. Twitch on!