Extreme Weakness, Twitching, and Tingling

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Lena4evaMissy

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Hello!Since 12/19, having what looks like all the usual issues-- started on a very long, all-day car drive with bicep jumping like crazy, then arm feeling "numbly" and weak (though fully functional, just not as strong as it "should be.") Started getting twitches in my left calf and also left thigh, along with some tingling, sometimes "burning' sensations, and same vague weak feeling-- though walking, climbing, running, all fine. Made the mistake of Googling, got all freaked out (understatement!) and ended up my wife take me to ER on Christmas night. :(Doc on call did blood work, CAT Scan, and some basic nuero tests— push/pull/walk on heels, etc., kinds of tests. Said I passed them all 100%. Of course, I was all in knots, just knowing I have the "Big A", and told her so. She said it didn't look at all like that to her, but DID tell me to see my PCP, as my BP had shot up to insane numbers. So now on BP medicine for the 1st time ever at age 46.Several days later, got in to my regular doc. Also said it didn't look like "anything serious" to him, but he would do more blood work (which has since come back fine). He also referred me to a neurologist for follow-up. I went to the neuro who was cleary a bit amused (in a friendly way) by my mental state and my concern over horrible conditions, etc. He did a few more things like the ER doc had done-- push pull, squeeze, etc, but nothing else. He told me it didn't look like the "A" word either and went on to explain why-- though I could not understand very clearly due to his thick accent, unfortunately. He said I "wasn't weak", but that I was going to kill myself if I didn't relax. Tell me about it!He sent me on my way to have neck MRI, Head MRI and an EEG, which I completed the day before yesterday. He said he would contact me right away if there was "anything bad." So far, no news is good news....I am currently prescribed Xanax, which has been the only thing allowing me to function— that, and the fact that ALL my docs AND my wife have forbidden me to Google any symptoms or the like--with good reason. But, since HERE is the where most folks DON'T have one of those things :D) I told her I would ask related questions here-- so here goes:Question 1: Neuro didn't mention BFS at all during my exam, though I told him all about the visible twitches, weakness, burning, etc. (which btw, I am now getting in my RIGHT calf as well as around my rib cage, though never to the extent I get them in my left arm and leg and get no other sensations on that side). Anyone think that's odd? Or perhaps his "nothing serious" TRANSLATES to ""Question 2: (and this is the one that bugs me the most) How come he didn't add an EMG into that mix of tests? I feel like that one would sure make me feel pretty good to have come back clean?I see on this forum how informed and kind everyone is and I thank you all for creating the one place that's helped keep me form going COMPLETELY off the cliff!
 
Hello, and welcome to the board. I'll try to answer your questions, and I'm sure others will chime in.1. Its not entirely unheard of that your neuro did not mention BFS, not all neuros believe it is a true condition. They believe in the Benign Fasciculation part, but the Syndrome part, they tend to think those symptoms are brought on by anxiety alone. But Mayo clinic would not have taken the time to do a study on it if it were not a true condition. BFS can affect the motor nerves as well as the sensory nerves. Motor nerves you get the twitches and jerks and sometimes cramps, the sensory nerves when hit (in about 40% of BFSers) will produce the sensory garbage with BFS ie: tingling, patchy numbness, pins and needles, sensations of tightness or stiffness, electrical zaps, tremors, buzzing, vibrations, and in some itching. There are plenty of neuros and docs out there that do diagnose and treat BFS, but dont feel like you have to seek one of these out, most treatments involve Klonpin for the twitches and anxiety, and Neurontin for the sensory issues. There are a couple of other meds that can be used but are not used as often as the ones I just mentioned and I dont know as much about them. Some BFSers find great relief with these meds but it is a personal choice that only you can decide if this route is best for you or not, all depends how bad your symptoms are affecting your everyday life, and everyones misery with this is a little different. Some choose to wait it out as symptoms can improve and others choose the med route so they can regain control and full function back sooner. Neither approach is wrong, it just depends on what you feel is best for you and your situation.2. He most likely did not feel like an EMG was necessary because you have no clinical weakness (not general or perceived weakness) but no clinical weakness or muscle atrophy upon clinical exam (which you passed with flying colors) the EMG would have been clean and he knew that. Not all but alot of us had to ask for our EMG for our peace of mind, I for one had to beg for one for months before I was allowed to have one, and a big "I told you so" from my neuro when it was clean, LOL. But with all that being said, it is your right as a patient to have one if you want one, if he refuses to give you one, make some phone calls and find someone that will, if that is what you feel like you need to be able to breath easier, but rest assured, if your neuro said you dont need it, you dont.Feel free to ask any other questions you may have. Lots of supportive souls here that are willing to help.Take CareRobynn :D)
 
Not much to add after Dr. Robynn´s explanation :) The first neuro I went to did not order an EMG either. When I asked him about it he laughed and said: What do you expect to see? I just left it at that. Guess he would have ordered one if he had thought it was necessary but since I passed the neuro exam he didn´t. Second Neuro I saw (because I could not relax without having had an EMG) ordered one and it was perfectly fine. Surprise, surprise ....
 
Thanks so much for the helpful posts. You know, I'm just assuming I have BFS (or something extremely similar) since none of the docs seem to feel I have anything "serious."Sure feels serious to me; I can truly say nothing has ever frightened me so much. If it were not for the Xanax at the moment, I proly could not even type this-- and am normally NOT at all that guy!I am feeling pretty positive right now, that it seems like so much testing/neuro workups have come back "good"-- I feel like I would have gotten a call already if there were issues with these last tests. This stuff-- as I know YOU all know-- is damned strange-- as I type this, now my RIGHT shoulder feels like just got an injection in it or something— and I'm getting twitches all over my butt! :eek: I plan to do a few easy minutes on the bike this evening and some very light arm work, just to keep things moving, without taxing much. Good idea?
 
Sorry that you have been concerned about your twitches and that you had to go to the doctor for Christmas. Did the neuro actually witness any of your twitches? If they didn't, this could be a reason why BFS never came up and neither did an EMG. When you see the neuro again you need to ask them why no EMG, and if you are comfortable with it, even ask them for an EMG. Impossible to second guess your neuro, they may be waiting on the results of the MRIs and EEG before having you take an EMG? This was my personal experience, though it went through different MDs, my neuro was pleased that I had had an MRI before visiting, so they could get right to the EMG - to give me the good news that my twitches are benignOne other thing, the location of your twitches means nothing, most people here like me, twitch all over
 
You know, I thought that as well--- that he might be waiting for the others to come back. He did "mention" the EMG, he joked about it as the "torture test." :) He made it sound as though it was something that could be conducted at his practice-- does that sound right? As far as seeing any twitches on the visit, I don't recall that he was able to-- which is ridiculously ironic as they tend to EXTREMELY visible-- more like flat-out jumping than twitching. You can often see them on my bicep and shoulder beneath my clothing. I think he said something about "you never see them when you are actively looking for them." I WISH I had been better able to understand his responses-- very nice guy/terribly thick accent. From what I have heard from others, he has a very good reputation, for whatever that's worth. Still, I WILL be sure to ask about it on my follow up. Thanks for the heads-up.
 
You found the right place to surf, google as it has been said on this site over and over is pure evil. You and i are almost the same age and before all twitches started i thought anxiety was fuel for my success. Once it goes negative its a crazy mind altering drug. Xanax was a godsend for me when i was a wreck, i will say the same thing to you that was said to me, BELIEVE THE DOCS, BELIEVE THE DOCS BELIEVE THE DOCS. Don't search and think you are special and they missed something, if you had a problem they would have told you, thats what they do. It will take some time to get used too, but this will get a lot better soon if you starve it of fuel(anxiety and worry). It took me 6 months and thats a lot of wasted time cause we are young and in our prime. Stay positive and don't obsess about this and stay off the internet.
 
Hi again Ed, sorry, but I just have to ask....just what is your definition of the word "numbly", :LOL: I like it, I would like to use it, but would like to know I'm using it in the proper way :D) I'm not kidding, I really like that word :D) Let me knowRobynn :D)
 
Ha! It is a word of my own creation! ;) Regarding my left arm, I felt like "numb" painted a picture of a total lack of feeling, or perhaps completely "alseep," neither of which is quite how it feels. As for "tingly," again, not EXACTLY, though the sensation reminds me a bit of a tingly feeling, like a short while after the worst part of hitting your funny bone has passed, or your arm MIGHT go to sleep if you don't move it.So, I made a word that's a lil bit o' both: "numbly."Feel free to pass it on! :)
 
Everyone did a great job answering! Isn't this board amazing? My neuro never said BFS. He said benign, will go away in most people, don't worry about it and you won't notice it (still working on that one). I showed him the About BFS which I had printed out from this site and his comment was "Wow - they've finally given this a name." He was in his 60s, very reassuring, said he'd seen this for decades, was very sure that it was benign. Doesn't matter what they call it, benign isthe important part. My doc did an MRI which came back clean, and because I was still totally freaked out, ordered an EMG hoping to reassure me and avoid going on drugs because I have bad reactions to a lot of prescription meds. MY BP was ridiculous also. My husband had to rush me to the hospital b/c of it. There are some great posts here about anxiety management which might help as well. Take care!
 
I'm back and forth on pushing for the EMG. From what I understand (and I am fighting HARD to let the "rational side" of me win one—for a change), if all my other tests are good and all the docs who have had me stand, walk, balance, push, pull, squeeze, etc., say there's no "true weakness" I can't imagine I would get anything from an EMG. Except some serious, hard-core piece of mind, of course! Which DOES look tempting, I'll admit! :)I will, however, ask to have some kind of testing DEVICE used for the strength. All this pushing, pulling and whatnot against the various doctors themselves doesn't seem all that scientific to me. Plus, none of them are hot. :LOL: IDK. What would you guys do?
 
Well I'll throw in my 2 cents again, but you dont need anyone to use some device to test your strength, Your doctors are not looking to see how strong you are as they are not looking for subjective weakness, they are looking for clinical weakness. There is a big diff between the two, percieved or subjective weakness means you feel weak like you feel during a bad flu or something, clinical or objective weakness means you cant do something, you cant tie your shoes, you cant open a jar of peanut butter, or such as in ours and your case, we would have no resistance back against when the doc is testing our strength, thats what they are checking, to make sure you have good resistance on all their pushing and pulling on your different muscle groups. For an example its not about how many push ups you can do, its about whether you can do one push up or not. Hope this makes sense.Take careRobynn :D)
 
No shame in that ED, we are all guilty of strength testing just "to be sure" LOL. So we are all one big group of really strong, really sure people, LOLTake careRobynn :D)
 
I think part of the problem with the internet is that we read words like weakness and although we understand what the word means, we don't understand it's meaning when used in a clinical medical context. So when we take our meaning and apply it to our symptoms, we can freak out, because we DO feel weak, or we DO see what we think is atrophy, etc. But the clinical definition of these terms is WAY different.My two cents - if the EMG is the ONLY way you are going to ramp down the anxiety level it's worth it. If that's what it takes to give you peace of mind, then ask for it. And I didn't think it hurt at all and i'm a big wimp.
 
Yeah, I'm doing OK on the Xanax at the moment, so it's proly pretty easy for me to say, "I won't ask for the EMG." I think it might be different without it, though. And I certainly don't want to be on the Xanax any longer than I need to, so I'll probably ask for the EMG if he doesn't offer it. But, if comes back clean, I just gotta let it go and deal— or start looking for small apartment or room to rent! :)
 
I got a real good feeling that you are going to be just fine Ed, you have a positive but humorous out look on this, and both are so important while you are dealing with BFS. And if you dont really feel these things, you are d*mn good at faking it, LOL. Either way your good.Take care EdRobynn :D)
 
Thanks, Robynn!I typically tackle things with at least a little humor. This one has been a little challenging, though. Guess I need to dust off the ol' gallows humor. ;) You and the others have helped quite a bit with all the great suggestions and insights; definitely makes it easier to maintain a smile! :D)
 
All righty then... just got back from first visit with my new Primary Doc. I've had my previous doctor for years, solely due to proximity. My new doc spoke/listened to me more today than the last 5 or 6 visits to my previous doc combined. Anyway, gave him the rundown on all that's happened. Since all my tests were done in the hospital where his practice is, he was able to pull up all the test results from my 2 MRI's (brain and neck/spine) and my EEG right there— all show no signs of anything out of the ordinary! :) :) :)He did the in-office neuro stuff as well-- push/pull/tip-toe, etc.-- all good, as has been usual since this started. Like the other docs involved, doesn't see anything to suspect anything, well,... like the things I have been fixated on!He will see me again after I have my follow-up with my nuero next week. He did make a change, though-- switch from Xanax to Clonazepam. I'll be interested to see if that further diminishes both the sensations and the anxiety around them.geez... I am ALMOST feeling normal again. :cool:
 
That is great news that you received a clean report on everything. You are perfect, he said so!My EMG (did NOT ask for) was uncomfortable but maybe the technician was a sadist who knows (Little shop of Horrors type - large needle in thigh and insisted I contract the muscle hard - ouch ouch ouch). Guess it depends - if I ever go back to the neuro I'll ask him about it - but I missed my last 2 appointments having gotten tired of docs in general....
 

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