Non-Stop Feet Twitching: Need Advice

ySplendidCrafts9

Well-known member
OK, anyone have non stop feet twitching? Going on 10 months now with the same feet twitching same spot! Freaking out that it is same spot. Seems everyone has it and comes and goes which I get other places, but this left foot wont stop ever!!!!!!! What some opinions...should I get another EMG?? I got one in Jan. Thanks!
 
10 months in the same spot without any significant weakness should pretty much rule out nasty stuff as far as I have read. But take a look around. People here have had twitches the same spots for years sometimes. I myself twitch almost all the time in my feets and the low part of my legs and that for more than 2 years. Yesterday I was running 4 km. Im sure you can do the same...
 
Chez,When I first came on the BFS board I contacted a few members on here about their twitching. I spoke to someone named suegirl. She told me that her feet and calves twitch 24/7 for like 2 years straight. You may want to contact her. She comes on here and posts every once in awhile. It may help to talk to someone who has twitched non stop in the same spot.~Leslie
 
chez, i am a one year left foot (sole and instep) twitcher.....scares me the hell out of it sometimes but i think it is compatible with bfs....
 
Hello,Yes I have twitched 24/7 in my feet and calves for almost 3 years(in January). Mine go constantly and hard like popcorn-esp my feet--arches, instep, outer--you name it they twitch. I also have another twitch going off somewhere in my body 24/7, too. My chin has been really bad lately. My hands are bad, too. I have never had an EMG just a clinical back in the very beginning. I have accepted the fact by now I would of had many more problems if it was something nasty. Rest assured!! I am 46.Sue
 
Not only do I get non stop twitching, most of mine is actually internal. My biggest hotspots are my chest and what seems to be my lower intestine. In fact, when I stop and think about it, pretty much my entire digestive tract twitches and flutters and buzzes non stop. It has been doing this for years (5-6?) , way before I started having BFS symptoms on my face and my legs (1.5 years ago). Just like you, this is nothing to worry about. Twitching is twitching. It means nothing.It sure does make eating Mexican food a little more interesting though. :LOL:
 
Sue,Thanks for continuing to share your experience here and how nice it is that you have not had to undergo useless tests. I had to go the neuro route because I need meds for the nerve discomfort but even if I hadn't had discomfort I would probably have undergone all the tests anyway hoping for them to find a cause or definite dx. It was all mostly a waste of time in the sense that it gave me no clear answers. The best answer is found in the progression of time and little in way of symptom worsening. I recommit myself to living life to the fullest regardless of what is going on with my body. It is really all I can do.Krackersones
 
Sue,You were one of the people who helped me when this ordeal started for me 7 months ago. That is why I thought you when this post came up. I am glad you come on here to reassure all of us from time to time. Hope you are doing well.~Leslie
 
Ok, so when you say 24/7 do you mean it doesnt stop even for a second? B/c my left foot never never stops!! If it isnt a big twitch it is a very little one and always in the same area in the arch of my foot. How can this just be benign?? It really freaks me out! It has not stopped in almost 11 months now!
 
FantasticFurball,I know you hate my input but I have read things that suggest that why muscles twitch, even in ALS, is not fully understood. This does mean that eveyone should worry more about having ALS but I think your impression that ALS is such a simple diagnosis and fully understood condition is misleading. For those that come to this board for reassurance, when they hear things like this and then get contrary information it actually makes them more anxious because they feel they can't trust the information here. Muscles can twitch because of dying muscle, nerve irritation, and demyelination and all of these things can be part of the same condition. I have evidence of atrophy (which I guess is dying muscle tissue) on a biopsy. Yet, that same muscle which does twitch is still the same size and stronger a year later. I run faster, can do more squats, and can jump and kick my legs higher and for longer periods of time than a year ago. Whether the twitching is caused by the atrophy or whether the twitching is caused by something else that impacts the nerve and in turn causes the atrophy is unclear. What is clear is that the atrophy is minor (only detectable on a biopsy) and does not cause weakness.I know it is tempting to want this to be simple. I really want it to be too. But when I really investigate this stuff I come away with thinking it is nothing but simple. Don't take this to mean that you can't rule out ALS to a virtual (but not absolute) certainty with basic clinical information (lack of progression, clean EMGs, etc) within I would say at least 6 months or so. It just means that ruling it out is more complicated than looking at someone and saying I don't see any atrophy or weakness and in ALS muscles twitch because of atrophy and weakness therefore you could not possibly have ALS. Krackersones
 
yes Krackersones, my neuro and als-specialist backs your quote. he agrees that the condition we all have in this forum is NOT als related. however he says that als is showing up differently with everyone suffering from it. misleading and false information does not help anyone here.
 
Laurent, thanks for adding some credibility to my statement. I'm sure there are neuros who have said things to the contrary but the point is that there is not some universal truth out there that all neuros understand and those on this board don't.
 
KrackersonesYou are so f....... freaked. 11 months of twitching in the feet without any weakness pretty much rules out ALS as the world record IS 11 months. Of course it could be the second case in history... But whats the odds? 1:100.000.000.000?I think it is okay to question everything, but again: to spread doubts that go against peoples benign dx is maybe a bit dumb. Its not like you are a doctor. You dont even come close. Im not sure what you motives are. But I think that you do post something everytime I answer ot try give people some comfort. Its like a pattern. Do you enjoy it?
 
FantasticFurball,I really wish some of us could meet in person. You might be able to get a better and more accurate idea of the type of person behind the keyboard. I plan on meeting someone on this board in person soon and am looking forward to it. I am not in a constant state of panic over ALS. I think I have the same level of concern as everyone here but maybe express it differently. My state of concern is mostly that I am aware of its existence and it sits in the back of mind as a remote possibility like most bad things that can happen but I feel for the most part it is thankfully not something that is a likely issue for me. I disagree with your posts sometimes not because I think you are wrong to give reassurance in the individual case but because your statements are written in general terms and express general principals that are not accurate from my point of view. You are correct that I am not a doctor. Why anyone would think I claimed to be or think I am is beyond me? And why anyone would think I get pleasure out of causing others anxiety is also as far from the truth as can be stated but of course you are entitled to your opinion. I feel comfortable stating my disagreement because it is based on statements made from the neurologists I've seen (and backed up by those seen by others, including Laurent). I may not be a doctor but I am an English teacher and former attorney (who worked defending pharmaceutical companies over medical-related matters) so I think I am someone qualified to understand communication about diseases from experts and report it accurately. People are free to think I am an idiot and disregard my statements in favor of yours or the opposite. What I do not understand is why you seem so incensed that someone disagrees with you? It is not personally. Give your opinion on or argue about the facts. But I think personal attacks are a waste of everyone's time.Krackersones
 
After 8 months of twitching, I no longer fear ALS. I also think that nobody else should once you have been examined. What I truely believe is that I have Peripheral Nerve Hyperexcitability. I don't know if it's .. BFS, BCFS, or Neuromytonia. I don't have any cramps or stiffness so I gues that rules out BCFS & Neuromytonia. That leaves BFS which is consdidered PNH. If all these neurologists really knew nothing about this disorder then why have all of us been prescribed anti seizure meds? After all, that is the first line treatment for this disorder. I tend to think the neurologists are more familiar with this disorder than we think. I also think it's more common than we know.
 
Both neurologists I saw mentioned to me that they suffered from twitching. I am willing to bet that there are quite a few neurologists out there suffering from some form of BFS as well.
 
The last several posters make some excellent points. Most neuros recognize that our symptoms are caused by overexcited nerves and they are familar with different medications that calm those nerves. There are all sorts of other nerve-related problems like fibromyaliga, peripheral neuropathy, and restless leg syndrome (which effects more than just the legs despite the name) that if you read about them you will find they are relatively common and not fully understood. Why should bfs or PNH be thought of any differently? Maybe one day all this will get sorted out.Krackersones
 
runnergirl,I am glad my post helped you. We are of the same mindset. I was told my situation is likely due to a virus/immune response sort of thing too. Krackersones
 

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