Sudden Onset Twitching: My Story

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seadragonsovereign

Well-known member
As some of you know, I am just in the beginning stages of this. It started with a finger tremor, then moved to slight twitching in my calves to full blow twitching in about a 100 different muscles, including my chin, my bottom, my elbow, etc. Non-stop. Some of it is just twitching, but some of it is like worms under the skin for a few seconds or like a "grabbing" of the muscle. Sometimes my arm jerks sideways a bit and sometimes my fingers/hands move on their own. All scary - even if it is all benign - its still consumes me. Been taking anxiety meds (Lexapro), which seem to help a very small bit and a daily Xanax which helps the most but makes me sleepy (hopefully my GP will renew the prescription).Went to see a neuro a few weeks back when it was in the beginning stages, but since the twitching moves around he couldn't get a good handle on it. Did some blood work to rule other things out. All clean. Came back in three weeks (the waiting was horrendous). I took some videos of the twitching just in case and showed them to him. He was pretty sure at that time that it was benign (he gave an initial diagosis of myokimia), but wanted to set up the needle test and emg. I should point out that I don't think I have lost any strength (doing the usual push ups, jogging, running up steps, etc). I guess I would say I have had the full blown activity for about two full months or more, though the symptoms started about 4 months ago.We did the testing yesterday and didn't get the "clean" emg I was hoping for. One muscle in my right calf had what the tech said was an "abnormal result", which just about shot my anxiety through the roof. The doctor looked at it and said he wasn't all that concerned (though this to me means still a little concerned) as the amplitude was still good (the issue was time of travel I guess). I also has a slightly slow response in a muscle in my forearm. Then he brought out the needles, which was actually a little more painful than I thought it would be. Because the twitching is all over the place, he was trying to chase them down to get good data. He stuck me everywhere! Calves, upper leg, buttocks, arms, spine, neck. He didn't express any alarm at anything and said everything looked ok, especially the back and neck where he said that any "bad" diseases or spinal related things would show up and usually first. He looked at my tongue and at first wasn't too happy. It was fluttering, though I haven't had any actual twitches in my tongue (yet) that I could feel. He kind of gave me an "uh oh" look at first, but then was able to stick a needle in it and listen and said it was fine. So, I asked him point blank: is it als? He said no, though it seemed to me that he was hedging a bit. MS or Parkinson's? Definitely no. Definitely not als? He finally said definitely not, but it was just weird the way he acted about it. He is going to put me on dilantin to help calm the twitching (anyone out there have experience with this?). Anyway, he said though he thought it wasn't necessary, a second opinion was probably a good idea. Seems similar to the experience that jlr had with his third neuro (see the next section). So he is supposed to set me up with the Ohio State University "muscle movement disorder" group. And in the mean time, I didn't sleep much last night. I was really hoping for a clean emg, but now I worry that the "abnormality" is just the beginning of more to come. I can feel for those posters who are panicking and going nuts cause I am right there with you. I have a wife and three kids to support and that is stress enough! It helps tremendously to have this forum to express ones thoughts and findings. I thank everyone for their support so far and right back at you.
 
I have had abnormal results too but with a no answer to all the big horrible diseases when I asked if I had them. So I relate to your plight. It sounds like the abnormal result was on the NCV (nerve conduction velocity test). In ALS, that test is supposed to be normal. If it is not normal, it points to another problem (many of them treatable, transient, or not nearly as severe or progressive). If I am right about your abnormal result, it points to some possible demyelination. If so, the myelin can grow back over time. You should find out if your abnormal result is in your motor or sensory nerve and whether it is a sign of demylination. If it is a sign of demylination, ask if there is any test you can do to find out about a possible cause. If you find the cause, you can target it and stop the whole problem.It is a great sign that you have not lost any strength. I have not either despite a year of all these similar symptoms. My NCV test showed slowing in my 8 sensory nerves and thus a sign of dyschwanian (sp?) demylination according to my neuro. My blood tests (ANA, immune complex) have pointed to an immune-related cause. However, because I have no weakness none of the neuros think I should try to treat my problem with drugs/therapies that target the immune system since there are risks. They say you only do this if the problem is getting worse over time or is really interfering with your functioning because of weakness etc. Otherwise, you just monitor and treat the symptoms. I am treating my twitching with .5mgs of Klonopin twice a day. I have read about dilantin and that it works great in some people. I hope it works for you. I would love to know how you do with it in case I need to switch meds at some point.I hope my comments have helped you. I am 37 year old female that leads a very active life, despite this craziness.Krackersones
 
Robert,Yeah I hear you. It really sucks when you have to wait for these doctors and these test results. I have been there.I suggest you follow up with your primary. He should have gotten a write up from the specialist and he could probably give you some additional info.As part of the visits with the neurologist he probably did some strength tests: walk on the front of your foots, press against my arms. Push up against my arms, etc. If he didn't find anything going on with your strength that is a very good sign.That the doctor sent you to another doctor is upsetting. But doesn't necessarily mean anything. They could have done this if they saw you upset and felt that you wanted a definite answer. The doctor could do this just to be thorough. I myself went to a general neurologist and didn't like his unclear answer. He then sent me to a special neurologist who works for University of Illinois at Chicago. They see the more difficult cases.So I guess I am saying that I have been to more than one specialist too.So if you are really concerned I recommend following up with your general. If your strength test went OK, I recommend you take some comfort in that. Beyond that try to enjoy the time with your kids and the time will pass.Hope I have helped.-43RichyThe43rd
 
Actually, your appointment doesn't sound all that discouraging at all. Your needle sticks were all normal. Even that worrisome tongue. That is the real test. Your neuro sounds like he hasn't actually seen many cases of ALS and is probably being overly cautious. You should see the look of panic doctors/nurses/techs give me when I say my presenting problem is twitching! Oh--and my neuro looked at my tongue strangely as well. She kept coming back to it and studing it. Of course it was trembling. I've never been so nervous in my life! I've been diagnosed "benign" and I'm sure once all is said and done you will not have anything degenerative either. Keep the faith. You sound just like everyone else here.Keep us posted.Becky
 
I too got a lot of weird reactions when I complained of just twitching. I guess it really isn't that common a complaint. I'm glad we can come here not feel so weird.
 
Robert- Do not fret the doctor sending you to another doctor. I just had that happen myself but not for BFS. I was having some headaches and my doc sent me for an MRA of the brain just as a precaution. They called me two hours after the test. I knew something was wrong. The doc asked what I was doing at 6 am tomorrow morning. He wanted me to get a CT b/c they found a small aneurysm in my brain. I sat there stunned. Anyway, he tells me its a very small aneurysm. I'm not concerned about it and we can recheck it in 6 months to see if its expanded/grown. I asked a ton of questions, obviously concerned that if these things rupture you've got about an 80% chance of ending up dead or in a nursing home. So he reassures me some more. Then he calls the next day out of the blue and says he thinks I should see a neurosurgeon. This got me really worried since the day before he poo poo'd it. I figured it out and he explained it though: #1 he sensed my unease at the news and the number of questions and thought it would be better to send me to an expert and #2 he wanted to be sure (cover his a*s) and make sure the expert concurred with his opinion that this was a small incidental finding that require nothing more than watchful waiting. I was still very nervous and spent last weekend doing a lot of praying and thinking "man if only I had benign twitching to worry about" versus something this serious. Anyway, tuesday I saw the neurosurgeon and he comes in and says "so we've got this 'finding' on the mra and you're worried sick about it right? Well, #1 you don't need this operated on. No doc in the US would operate on this and #2 I won't even call this an aneurysm yet. Its too small still. You don't have a ticking bomb in your head and this thing may never grow. And you don't need to check this is 6 months. We can wait a year before we look at it again."To make a long story short, docs often send people to other docs for a myriad of reasons and very often its an inquisitive patient who may want added peace of mind or because they just want another doc to opine. And if this second doc is more experienced, it could me a complete blessing because he/she could very likely come in and provide reassurance that you're fine. In my case I was initially *beep* my doc was sending me to a neurosurgeon. It turned out to be a blessing b/c he was able to really provide some expertise and answers which will reassure me WAY more than my regular doc did. So hang in there and focus on the positives of your exam which sound overall pretty encouraging.
 
Yes, my husband got the worrisome looks as well. We even had a doctor go so far as to say that his symptoms (perceived weakness in the shoulder muscles) were common in "all the bad NMD's." Yet, all of his testing was fine, and his strength is normal, and it is 10 years later. As for "abnormal" results. I really do believe that most of us would have these similar results if we actually saw the interpretations of our studies. Some physicians will classify ANY variation as "abnormal," while others will exclude those variations with limited clinical significance. Plus, it depends on whether a neuro, or a tech is giving your results. For example, a radiologist will find something on a scan and say, "clinical correlation recommended," while the physician will dismiss it, because he/she has already DONE the clinical exam and found NO correlation. As for MS, it wouldn't have been detected on an emg/ncv, and fasciculations are not a symptom. Whoever linked them together on Google ought to be shot. Hang tight, DPR! You haven't been told anything concerning, though that's easy for ME to say, right? Gosh, I was actually diagnosed and treated for MS at one point, but I'm still kickin and strong today, (without freakin MS, so there you have it.) As others have said, it sounds like your neuro is just covering his butt. They do that a LOT, because of the number of lawsuits in this country. Blessings, SueBlessings, Sue
 
Deadpiratesrobert - Oh yes, the whole referral thing - I got that for years. I think it was partially because I was in pain and the muscle tension was causing injuries but also because there is a certain amount of curiosity about what Doc X and Y thinks, if they see something else, or more than Doc Z does. I'm not in medicine but in science and another pair of eyes is always useful, if nothing but to bring ideas into the thought process, another perspective. This is good thing if you look at it that way. It is difficult when you are the patient getting shuffled and it can add up money, stress, and time wise.TJM - I had a similar experience with an ocular tumor - it was scary but so far remains benign. But that first week after the many investigations and tests and before the Dx came back were awful. Many years later, I now realize that I might have had that lesion all my life; with all the great new imaging and diagnostic equipment it was 'found'. Who knows? Perhaps the same for you? That was the only time I have had health anxiety so while I never was of afraid of ALS or any nmd, I certainly understand the fear-of-the-dark-road-before-you crap.
 

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