My Journey with Twitching & Buzzing

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Alicia1024

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I apologize in advance. This is quite long, but I want to be as thorough as possible. I've never put my story out there before.This site has been a God-send to me for a bit of time. When my twitches started nearly 5 months ago, they had me panicking. In addition to the twitching, my only other symptoms were buzzing sensations through my feet and legs, however, at times, they went up through my trunk and even neck. I also had perceived weakness/muscle fatigue/"heavy legs", though it was eventually found by the neurologist that I had mono. So, between that discovery, and the help of this board, I had my first HUGE sigh of relief. The only other findings at my visit were fairly spastic reflexes in my knees and clonus in my feet/ankles (however that works).Ironically, my neurologist mentioned ALS at my first visit even before my twitching started. I knew next to nothing about it at the time, so I went home and researched. The first twitch I noticed was in my right, upper eyelid. It literally twitched constantly for nearly three weeks! Gradually, it subsided, and I began noticing the twitches in the arches of my feet and before long, they had spread everywhere. One day, my index finger waggled intermittently for nearly three hours. As far as I could tell, most of them were the "thumpers" I've heard described on here. It didn't even occur to me to "look" for others. I FELT enough of them. I assumed that was it. One day, I was sitting on the couch with my legs propped up, and I noticed that my foot was twitching. But, I didn't feel it! So, this threw me into a bit of a panic. After noticing that, I noticed that, in addition to the thumps that I get in my right shoulder, there are almost always twitches there that I can easily see but do NOT feel. I have many of the same in my calf muscles. I was pretty nervous for my up and coming EMG. I "knew" I was going to fail it. I ended up with a pretty thorough EMG of both arms and legs and was considered completely clean. They were even 'ooh'ing and 'aah'ing over my "young, healthy" nerves on the nerve conduction study. I praised God following the EMG. Finally, I can let this go! I had read this board and seen that if these all-over twitches were ominous, something would have OBVIOUSLY shown.Then, about, a week later, I was sitting at the park with my kids, perfectly calm. I went to swallow, just like I would any other time, and it just didn't happen. I don't know a good way of explaining it other than it was just like my brain forgot how to swallow. Like when you swallow a few times in succession ... eventually, you have to FORCE it. This happened then and then again on occasion. I became pretty fixated on it, since, as I read the symptoms of ALS, at the time, I rejoiced the absence of swallowing problems. Now, here I was. I took some anti-anxiety medicines hoping that it would take it away, that this was just something that my anxiety was making up after reading about it on the internet. I wasn't choking or having any problems eating ... I just felt like I was having a more difficult time getting it to actually GO. About a week later, I was eating oatmeal, and I choked. New panic. I convinced myself that I couldn't swallow anything with little bits of food, because I would choke again, so I started eating only things that I could compact into larger, solid pieces, and I've had luck with that. But, since then, I have been struggling harder and harder to get it to start. I have noticed that things like cake and other things that are dry or thick and crumble just get kind of stuck in my throat, and I need to take a drink or something to wash them down. Since it started, I should note, that I have also had persistent phlegm and a sore throat (for 4 months, now!). The phlegm is in higher concentration after I drink fluid, but seems to be lower after food, and the sore throat is sometimes constant, but sometimes seems to ease up for a bit after eating or drinking.I consulted the neurologist about this. She "assured" me that if my swallowing issue was of neurological nature, I would be also choking on thin liquids. So far, I have not had THAT problem, but food has been a consistent problem. Even swallowing without food or liquid feels tight or strained. I have also noticed a clicking sound in my upper throat, which is sometimes present and sometimes not. I have never had that before this started, either. I was sent back to my GI doctor, as I have a good bit of issues with acid reflux, and all he did was changed me from Prilosec to Nexium. I began to assimilate to this new problem of mine, as several months had now passed and nothing new was happening. And then, as soon as I calm down a bit from THIS problem, I wake up one morning, and as I am out and walking around, I notice that my legs feel unbearably heavy, though in a different, yet intangible sense than they did before. Just walking down a flight of steps causes my legs to almost completely lock up. I didn't feel it "coming on". Only a few days before, I had walked nearly three miles with a friend. And walked around the rest of that day in my high heels. No problem. So, for the first few days or so, I decided that I had probably pulled a muscle or something in my back. Or maybe this was just some kind of exercise intolerance that I have read about, since my twitches have seemed to amp back up again. But, unlike most of what I read, this isn't after hours of exertion or a 2-mile run. I get out of bed and walk down the steps and my muscles lock. I haven't tripped, yet. No drop foot, and negative Babinski reflex, but it feels as if lifting or moving from my hips is beyond a chore. I rested yesterday, hoping for some improvement, but my legs today feel almost worse than ever.So, after having been fully relieved and released this ALS fear, I feel as if it is back on me, and even stronger than ever. I have called my neurologist several times in a panic, fearing the worst, and she has told me, several times that she is "100% sure" that I do NOT have ALS, and last time, she even stated that she would stake her life on the "fact" that I do not have it.I wish that I could just believe her. I try to. At the same time, I question what could ACTUALLY be causing these things. Yes, I have been guilty of reading things ALL over the Internet about ALS. Truth be told, I have spent most of my morning doing it, and am more convinced than ever. I know that no one can diagnose me, and I am not looking for such. I just have myself so worked up that I am looking for SOME shred of hope in all of this.To close for now, I will add some test results, and a bit of my background and family background. I am a 27-year old female. Prior to March of this year, I have never noticed any of these strange symptoms, aside from the hyper reflexes, which I have always had as far as I can remember, and which my Dad, sister, and Mom also had, which is why I never gave them much thought. As far as blood work is concerned, my B-12 is borderline/low, low vitamin D, low ferritin. I tested positive for RA factor, but my sed rate was normal, so she isn't pursuing it at the moment. Oglioclonal bands were found in my spinal fluid, but no lesions or anything of the sort were found on my MRI, aside from hemangiomas in my thoracic spine. I just had a myelogram for those last week and am waiting for results to see if perhaps the leg sensations are from spinal cord compression or something of the like (I am praying that they ARE!). Anything but ALS. I have tested negative for Lupus, negative for Lyme disease. My barium swallow at the onset of my throat symptoms was normal. They are planning to repeat it soon. There is a family history of Hereditary Spastic Paraplegia, which would explain my leg symptoms to a degree. However, the course of that disease is supposed to be VERY gradual and is limited to the legs, and therefore, does not explain my swallowing problem or twitches. I am being referred to a neuromuscular specialist in Columbus, Ohio, who has done research with this hereditary thing, but I can't get into her for a couple of months. In the meantime, I am racking my brain, and panicking nearly constantly.I am just wondering if anyone out there can offer any reassurance (even if it's not sincere! Haha. I'm at my end ...) or insight, or if anyone has had any of these symptoms and what they have turned out to be. I don't mean to panic anyone with my clean EMG, but it really has me puzzled. If you're a praying kind of person, I would really appreciate it. I have a 3 year old and 6 year old, and the prospect of ALS is beyond terrifying.
 
Hello and welcome to the board, it's already late here (Emilyomousey) and I should go to bed, so I just leave a short note here for you: you're not alone with these leg issues. There are other people with BFS here who have their legs tensing up to a degree that makes it almost impossible to walk. I have always had big issues with my legs, and if you look for older posts of suzyQ or mommyLDN you will find out that they were also not able to walk properly. This can come and go with BFS, and it is really hard to believe that it's really benign. Walking DOWN stairs especially is almost impossible when my legs do that, I feel like tripping every step. So, more tomorrow, just wanted to give you somereassurance.
 
Hi Alicia..stop panicking..your ok, really anxious but your ok...u must believe your neuro when he says it's not ALS..they know there stuff...everything u describe is bfs...the tongue swallowing issues are classic anxiety symptoms..read thru all the posts on here there are heaps of people with problems swallowing that were all caused by anxiety...it's a nasty little monster that gets in your ear and scares the crap out u...also this is just my opinion...please stop googling...another big no no for anxious people...u will keep searching till u find something that scares u to death guaranteed...Everyone on here whose ever googled got worse...u don't have ALS so don't google it...u have bfs...lots of buzzing with bfs lots of other sensory things..and lots of different weird twitches...Are u taking anything for your anxiety?...and I am sincere when I tell u your are going to be ok...I don't need to bs u I'm living with this everyday too...best wishes shannon
 
Thanks for your timely and helpful reply. I didn't think about it until after you noted it, but it is significantly harder to go down a set of steps than up them. As for the rest, I suppose only time will tell, but I needed a venting place in the meantime, and this seemed like a good place for it. I've skimmed through some ALS boards, and there are so many "Don't trust Neuros!/EMGS!/etc." people that I don't dare head there unless I would ever happen to actually receive a diagnosis. Those boards are scary places, and while helpful for those battling the disease, pretty scary for those dealing with unknown.
 
And even more replies since I noticed the first one. First of all, I just want to thank you for your time and your thoughts. It really, really means a lot to me. You are correct. I am VERY anxious. It has been a big, emotional roller coaster through it all. "You might have this." ... "You definitely don't have this." ... "Let's just be sure that you don't have this." ... "I'm positive that you don't have this, but I want to send you to a specialist." If it wasn't for my swallowing (Yeah, I'll say it, feared Bulbar) symptoms, I would much more easily dismiss the stiffness in my legs and the other odd glitches. They gave me some Zoloft for "anxiety", but I've been off and on and couple times and don't feel that it does much. I was taking Klonopin from time to time when it got bad, but I'm out, now. I'm just struggling to put this behind me, and it feels as if right when I do, something new creeps up. I had really bad mono that knocked me down for 4 months, and then the weird neurological stuff started right as THAT was finally clearing out. I'm ready to be back to normal! ;) None of the symptoms scare me much on their own. The twitches are annoying, but so what? The part that debilitates me is what they "could" mean once I throw them with all of my other symptoms. Thanks again for your words. I really, really think this is a GREAT and helpful forum, so, once I'm on the other side of this all, I hope to be able to lift someone else out instead of needing drug out myself! ;) I will update with further doctor visits and tests, as you never know who they may help, and it always drives me batty when someone comes in OMGPANICKED!! and then doesn't follow up. I want to know what happened to them! Anyway, as you can see, I am a chatty person! Have a good night!
 
Your fasciculations are definately benign and not due to ALS. You can believe that, it is definately true! But ne more sentence to these "don't trust EMG's" that were told to you on the ALS forums and scared you so bad: ALS is a disease of upper motoneuron damage and lower motoneuron damage. There are some people out there that had clean EMG's and had ALS, yes, there might be some.For these ones that are hit by upper motoneuron damage first (usually shown by spasticity), this will not show up in an EMG. So they can have normal EMG's befor they are diagnosed with ALS by a bad EMG, which will occur when lower motoneuron damage is starting to set in. BUT-big fat BUT- fasciculations are always a sign of lower motoneuron damage . So if fasciculations are due to lower motoneuron damage, then the decay of nerve cells will be very visible in EMG. Fasciculations appear late in progression of lower motoneuron damage. So if you present to a doctor with fasciculations and the EMG shows nothing but these, you do not have ALS. Definately.
 
Chrissy I am shocked that you would make a post like that, I'm not trying to start a fight with you because I consider you a friend. But that is just careless....aliciaicila just try to beleive your neauro, they are trained in finding this stuff. They go to many years of school and specialize in this area. I don't care how many stories they are on the internet, just beleive your neauro. I know all of this is scary and I hate that you have found yourself in this place too, but it is what it is, benign....God BlessRandy
 
Hi Randy, no, that it the truth and that is also what every neuro will tell you, maybe you did not read it well? Or maybe I didn't really explain well what I was trying to say.She was afraid because she was told on als boards not to trust an EMG by people who were diagnosed wrong-negative first. For people that will have damage of upper motoneuron damage before lower motoneuron damage, the EMG will not show signs of upper motoneuron damage. Upper motoneuron damage has completely different symptoms , e.g. spasticity, and never produces fasciculations.But fasciculations in ALS are always a sign of lower Motoneuron damage, so if someone would have fasciculations due to ALS, this would FOR SURE show up in an EMG. If fasciculations occur without clinical weakness , they are benign. If one has a clear EMG, even more. Noone here shows signs of upper motoneuron damage at all, so this is not even anything we would be scared of. But this is the reason why people with ALS sometimes will tell others not to trust an EMG. There are many people scared out there by these words of sufferers, and I think it is VERY important to make a difference between upper MND and lower MND. If these people she was scared by would have had fasciculations due to ALS, their EMG would have shown that and they would not have been misdiagnosed. There is no way for a halfways skilled neuro to miss that. I even think that if people that come here would really know the difference, they would not be sent down the way of anxiety again every time they read stuff about "don't trust EMG's" after being reassured on this board that EMG's are safe. Because for us -people that show fasciculations- if the EMG is clear or only shows fasciculations, it IS SAFE!! It would be so much easyier if people would come here and just believe deen inside that the things we're telling them here clean EMG=no ALS were right, as this is the truth. But you know how anxiety works....the little devil on their shoulder will maybe tell them to go to ALS board sometimes (he's done that to me..), and then they will read these bad things again and be a nervous wreck within minutes. They come back here and then someone will tell them again, that their clean EMG is a proof, and maybe they will be screwed up even more. For some people with high anxiety "never read on ALS boards" is translated in their brain into "OMG I must not read there because I will find out that there were people starting like me and the people on here do not want to tell me the trust". This is absolutely not true, we know, but anxiety really messes up ones brain.They will probably google for more of these bad storys and then they will be sent down deep into a nightmare that lasts for months and even years. I wonder how much percent of the people on here felt good after finding the forum, and then went bacl to an ALSboard just to be sent over the corner again..So once again I think it is very important to make a difference between those two things, UMND and LMND. And I think it is better to have some information about the scary nasty stuff here on the board in the "save" environment than to go to the ALS board just to read "I had a clean EMG and was diagnosed later..." because THIS really makes people freak out...
 
Good points, Chrissi. I think the moral of the story is that we need to stick to our own boards for our own problems. I hate it when I google something and the <you know what> sites even pop up. Puts a pit in my stomach. The very few times that I have gone on there, I have put myself into a complete frenzy.As far as we know, on this site, hardly anyone or no one has gone on to develop further problems. You hit the nail on the head when you said how you can read just one thing, and all that reassurance goes flying out the window.Maybe we should have some sort of pact with each other that we will stop googling and stick to our own search features on this board? That would be good for all of our sanities.Mitra
 
Thank you, Crissi. I understand what you are saying & understand the difference, now. At first, I thought a clean EMG cleared one from ALS completely. I now know that such is not the case if only UMNs are involved. So, my mind is stuck in this battle. My fascics are benign. After the EMG and what I have read here, I am confident in that. My anxiety, however, still has me stuck in this trap. Benign fascinations + a very real swallowing problem at age 27. Bulbar onset with BFS? What in the world would be the chances? I've never even read of bulbar onset at my age, aside from family cases, let alone with my abnormal pattern (no speech or voice problems at all, even after 4 1/2 months of swallowing issue). My tongue twitches, too, but I have NO problem chewing, speaking, controlling anything in my mouth. I just can't seem to push the food down, so I'm sure the tongue twitches are benign, just like the rest. So, why the swallowing problem? I try to let it go, but it is an ever present reminder. I am losing a good bit of weight (which is just fine with me so far!) from either the inability to eat or simply not doing it out of fear. My barium swallow was normal. Neuro swears I'm fine. It just never eases up, nor does my mind concerning it. I'm trying so desperately to let this go and get on with my life. I go through phases where I'm okay and then periods like this week, where it is an ever present terror. I just want to be able to let this go, and I know that this forum is a good place to start the process.
 
One must NOT mess up upper motoneuron with bulbar. Bulbar means only, that the nerve damage starts in the muscles of the throat/head etc. but still due to lower motoneuron damage which will be picked up by an EMG. Upper motoneuron only means the first passage of motor fibres from brain downwards, but has nothing to do with upper and lower parts of the body.
 
Have you taken anything (like a xanax) and still noticed problems swallowing? I had swallowing issues (still do on occasion) where I felt like I couldn't get smaller food down the first try without it getting stuck in my throat (like rice, for example). But, the good thing is that when I took a xanax, I would scarf down food with no issues, so I was relatively sure it was anxiety.I am almost positive it is related to anxiety. It's a hallmark symptom of severe anxiety, troubles swallowing.Hang in there and trust your doctors. Plus, you are so incredibly young, the chances of you having <you know what> are remarkably low, and with your clean neurology exams, they are practically non existent. It would be the world's biggest anomaly if you had it.I wish we could all remember how incredibly rare the disease is. I try to remind myself of this frequently.Today, I'm in the mindset that most of us have zapped our nervous system from anxiety.Mitra
 
Swallowing troubles is definitely a sign of anxiety. Also, the more you focus on it, the bigger the problem SEEMS to be. Last night, we did this exercise where we closed our eyes and the instructor told us to imagine a lemon on a plate. Then imagine cutting it into 4 squares and bring it up to our noses and smell it. Then finally, imagine biting our teeth right into the lemon slice. I puckered my lips. There was no lemon in site, just my thoughts. That's how powerful the mind can be. So, if anxiety causes some swallowing trouble and you associate it with something bigger, your mind will definitely play tricks on you. Instead of trying worrying about it, focus on what your neuro said for reassurance. -Matt
 
Yes. I have taken a little bit of everything that I've heard could possibly help. Lol. I've tried Klonopin for anxiety, Magnesium & Calcium, which I've read have helped certain people with their throat tightness (I've even heard that it may help with the twitches. That was a nope for me. I've even been taking as much as my body can tolerate, just hoping that it may change SOMEthing.), etc., Baclofen as my doctor suggested that it could be caused from some kind of spasm. All to no avail. Sometimes, I feel like it may help. When I get extra tense, it certainly makes it much more difficult, but it never goes away. I have days or times of the day where it seems to ease some but never completely go away. Some days seem harder than others, but it never gets to a point that is assuring. For whatever reason, it seems that taking a drink of anything seems to aggravate it, especially something thick. I get a build up of thick, clear fluid in my throat, which I sometimes have to spit up (gross, I know. Sorry for the TMI.) This sent me into a bit of a frenzy when I read that that is common with people with ALS. Up until then, the presence of it reassured me, as I assumed that it was some sort of coping mechanism in my throat from my reflux, which has been amped up lately. It IS, afterall, possible with acid reflux and dry mouth ... and, in turns out, also, of course, the dreaded ... Oy.It all appeared rather suddenly. One day I was fine, and the next, BOOM. Sometimes, I swallow and it feels ALMOST normal. At others, it doesn't feel like it's even going to happen. Sometimes, I have to sit there and center myself before I can even get a swallow to start ... like, the little gulp part. I have no problem when the liquid is actually going down. I just feel like there is some kind of nasty build up after it, which is unnerving and sometimes makes me go long times without a drink. I tend to drink a lot at once to avoid it as much as possible, and yet stay hydrated. It seems to dry back out after several minutes. Certain foods go down fine. Anything dry or sticky seems to give me a heck of a time, which leads me to wonder if it could possibly/hopefully just be related to dry mouth or something. Hard to tell, really, as I'm obviously not a doctor, and prior to five months ago, this was all foreign to me.I feel like a swallow study and/or EMG on my tongue (even though I seem to be having no problem with my tongue, it seems to be protocol for Bulbar) would be reassuring if they were clear. I've heard they can do EMGs on your throat, which is where I am having the problems. It doesn't sound enjoyable in the least, but I am to the point of desparation that I am willing to try anything they're willing to do. :p I have had a barium swallow, which came back clean, so my neuro feels confident enough with that, and so far, I haven't been successful in getting the other tests. I'm waiting for an appointment with a neuromuscular specialist at Ohio State University for a second opinion, but I haven't even heard word on a potential appointment date, yet. Greaaaat. :p My neurologist has been considering referring me to her for awhile, anyway, as Hereditary Spastic Paraplegia runs in my family, and one of my mom's first symptoms were her brisk reflexes and clonus (same as me). Once again, thanks for listening to what I'm sure sounds like a lot of silliness, but this is what I'm encountering on the daily, and I'm looking for any possible insight or assurance that anyone is willing to give. Thanks again! :)
 
Get it evaluated, but really keep anxiety in mind. For example, I'm extra anxious today for some reason (obviously, I can't peel myself off the board today), and I'm having the same troubles swallowing (plus lack of appetite, digestive issues, etc.).Read this - especially the thick mucus part. The mind is very powerful. My symptom came out of the blue as well...and has pretty much gone away now that my EMG was good and a lot of my tension was released.Throat tightening/Choking/Swallowing problemsWhat you feel:Often one of the first symptoms of anxiety. People complain of feeling as though they will choke or being strangled. In reality its not nearly so dramatic - the muscles in the throat contract and salivary glands produce thick mucus leading to a feeling of restriction around the throat, it can produce a feeling that you are having difficulty swallowing or breathing. In fact you are not having difficulty, it just feels as though you are. You also get a dry mouth and it can feel like you cannot drink but you can.You feel as though there is something stuck in your throat or sometimes feel there is a lump in your throat. Other times you may feel that you can barely swallow or that there is a tightness in the throat, or that you have to really force yourself to swallow. Sometimes this feeling can lead you to think that you may suffocate or get something stuck in your throat.What causes this:When in danger, stress biology produces a tightening in the throat muscles which produces the choking or 'something stuck in the throat' feeling. When in a nervous or stressful situation, many people will experience this feeling. It is often referred to as 'a lump on your throat'.There is minimal danger of choking or suffocating under normal conditions, however, some people are very sensitive to things in their throat and therefore caution should always be observed when eating. Chewing food thoroughly andslowly will prevent inadvertently swallowing something that may provoke someone to gag. This symptom can come and go, and may seem to intensify if one becomes focused on it.
 
PS: I hve a scalloped tongue and TMJ as well. Scalloped tongue is present in like 15% of the population or something. I'm sure you've always had it. But same thing, I worried about swallowing and started checking out my tongue non stop. Our biggest illness is hypochondria, really. And, it's not something to be taken lightly - our anxiety, if not taken under control, will cause our body more harm than probably anything else.
 
Thanks for the read! I hope the throat thing is all a matter of anxiety. If it EVER eased, I could more easily cling to that. It hasn't gone away since it came. Even when I'm out and laughing and having a good time. Klonopin to the point of sedation or not. Though, admittedly, my mind is NEVER not focused on it. It's been that way from the beginning. I've come to almost dread every single time I know I'm going to have to swallow. This thing has me wound pretty tight (if you couldn't tell ... ;) ) I'll be pretty upset if the only place that I have NOT twitched is the one with a real problem! :pGood news, though! After being a pain in the butt with my neuro for long enough (I truly am. I acknowledge this! ;) ), I got a call tonight saying that they would be scheduling me for a swallowing evaluation. I will get a date and time in the morning. So, I'll certainly be anxious until it happens, but now I can write off the anxiety from it's lack of progress. I can always find something to be anxious about. Ay ay ay ...
 
Good luck with your swallowing evaluation! I'm sure it's going to be fine.You know what - even if you're laughing and having fun - the anxiety has not subsided. It's still there. Anxiety cannot alleviate that easily, especially physically. And, I'm just like you and others on this board, kind of obsessed over the whole thing. Even if my mind is off of it for a while, it's not completely gone.I have been diagnosed with Generalized Anxiety Disorder, and something of this nature is not easy to shake off by any means. Even with an EMG that only showed benign fasciculations. So, I totally get it, and you're not alone.It's just so much easier seeing this, when it's not yourself!! :)
 
Thank you! & I completely agree! I can read others' stories and think "Wow, you're fine! Stop being so scared!", but as far as mine is concerned? Fuggedaboudit! It's always different dealing with ANYthing when it is you. Nothing seems so bad or so good until you experience for yourself. I, too, have a Generalized Anxiety Disorder diagnosis. I was diagnosed when I was 16, and it has been affirmed many times! :p It is strange what puts me over the edge sometimes, though. I went three years without a panic attack, and then the silliest thing sent me into a spiral right at the beginning of the year. A friend of mine passed away not long after. Following that, I was in bed with mono and a blood infection for 4 months, and then all of this started! So, it's safe to say that I haven't had much time away from my anxiety this year. I look forward to the day that I can breathe again! :)
 

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