ALS vs Benign Twitches: An Analysis

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S

sabre

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I have looked into specialized medical literature and here it goes:ALS twitches have larger interval (3,5 s)Benign twitches are faster (0.8 s)Of course its average.I think we have to be honest here: Doctors here reported patient who twitched and cramped one year before there was EMG finding and weakness/atrophy. But it was ONE case. I think we should know all.Unfortunately there is one theory, that in some cases "nerve hyperexcitability can precede nerve death - motor neuron disease". Dont want to scare anyone including me..its just fact but not proven, of course.
 
Well, this rained on my parade. . . .my twitches, when they occur, fluctuate between fast and slow. I guess, then, based on the average they're als-related??I think it best that we all cease and desist in worrying about the differences between als and benign twitches and focus on context: weakness? No. Atrophy? No. Clean EMG(s)? Yes. Good clinical exam(s): Yes. Doctors diagnosis says it's not NMD/als? Yes. Other causes for twitching, cramping, even atrophy? Heck yes. Then timing of twitches, locations, frequency, strength, etc, etc, etc don't change a diagnosis of BFS, regardless of the underlying cause. And certainly we all understand that there are rare occasions when twitching can be the presenting symptom; but theoretically, I could contract the same form of rare bone cancer that claimed my brother-in-law 4 years ago. Nothing I can do about that, but chances are, I won't--that's why it's rare! And various folks have quoted their docs as listing various amounts of time as a marker that they're OK (4 mos; 6 mos; 1 yr and beyond). That's common sense, but not necessarily scientific--and it may be CYA from lawsuit-averse medicos. I'd reckon we'd see far more people who had been told they were OK at 6 months only to find out they have "it" at 13 months if this was anything BUT rare. And that would most definitely be in the literature and on every doctor's mind. How many of you were nearly thrown out of the doctor's office just for bringing it up? Likewise, the literature I've found also says that there is no higher incidence of NMD among "twitchers" than among the general population (the Mayo Clinic study included). A clean EMG at the outset means that the person doesn't have als. If, by coincidence, a handful develop it later on, there's nothing that proves the hyperexcitability led to NMD, or was even a precursor. I had been twitching for only 2 months when I first visited the neuro; he seemed almost miffed, after the clinical exam, that I was taking up his time with my fear of als. Nothing tentative about it. Rare, rare, rare. Maybe I'm just whistling past the graveyard here (pardon the gallows humor), but one thing I have learned from the literature, people's experiences here and my own docs is that context is what matters. Context, not location, timing, frequency or strength of twitching.My two cents--but I won't--can't--spend my days now trying to time the average intervals between twitches! :eek: Mark
 
Hey Mark!My goodness, my twitches also fluctuate between fast and slow!! Thanks for your post, my anxiety was heightened slightly this morning.Warm regards to youSandra
 
Hi Mark,My twitches also fluctuate between fast and slow.I find this website generally helps me but every now and then some posts scare the living daylights out of me.Maria
 
Had, perhaps you do not need to post things such as that. I will be the first to say it. I know your grabbing for straws @ this point but..now your going to have people timing their twitches which isn't cool. I have talked to several people whom have gone to numerous neuro's and they will tell you that it DOES NOT MATTER how FAST , HOW LONG, WHAT SPOT etc..Benign is Benign w/ no CLINICAL WEAKNESS and ATROPHY. Perhaps be more careful on the posts you make Please. I see it has got a few people worried and us BFS'rs don't need that!Thanks! ;) God Bless.
 
If I can make a comment as a physician? Please avoid trying to interpret medical literature if you are not familiar with what it is saying. Again, as of late, I have seen a tremendous amount of information posted on this forum that has concerned me. There is study after study, discussion of what is normal and not with regard to various diagnositic tests, repeated and expanding tests. Testing for the sake of testing is never a good CLINICAL idea. Taking medical studies, "STUDIES", at their face value is inappropriate at best. These are lab findings based on a particular hypothesis or theory, based on a specific set of materials and objectives and it is not meant to be the be all and end all of diagnosis or clinical course. You are all trying to diagnose in a vacuum. THAT is what gets you into all kinds of trouble with anxiety and hurt feelings and misunderstood comments.You can not, in medicine, pick one symptom or test and make that the rationale for your diagnosis. That gives you the start of a differential diagnosis. Then you must look at a whole plethora of information and testing and then and only then may you begin to make a diagnosis. Please, this forum has gotten far more contensious as of late, it has been information heavy - which by it's nature is not a bad thing as long as you have the ability to clarify the information as it pertains to the individual. There are a tremendous number of us on this site who need reassurance not further need to question. Please I am asking, no I am begging you to think through what you choose to post and how it will affect others. If you feel it may upset or create anxiety, do not post it. If you are not qualified to help educate with regard to the information you have provided, again, please think about whether or not it should be posted.BFS and Cramp Fasiculation syndrome is a diverse condition and it is not readily recognized however all of the bad things you worry about are quite well recongized. Your doctor will rule those out and if they have in fact been ruled outthen there is nothing further for you to try and diagnose.Dr. Kit
 
Amen, Dr. Kit. This site has surely changed to the point it is almost worrisome to actually get on it.I am glad your back, where are all the old timers.Terri
 
This is why Kit is a Saint! (I'm sure there are other reasons as well, but I don't know all the details. . . . ;) )My blood pressure spiked when I read this post yesterday. Today, I'm A-OK.Thanks, Kit.Mark
 
Dr.KitThank you so much for elaborating on that, It sent many of people in to a tail spin and I tried to jump on it as fast as I could that information can be REALLY misunderstood. Your words were of excellent choice. It has been becoming a place that I have thought about laying off of awhile b/c people are reaching a little to far for information and sometimes it makes it scary bc we dont understand it. I am a LPN and I still dont understand A LOT of things!!!!!Good Post Dr.Kit! :sick:
 
Kit: Thank you so much for providing your input. You certainly are a voice of reason that arises as needed to ease the building anxiety that erupts from the occasional posts that provoke the secret doubts that seem to be so prevalent in the minds of most of the folks that participate on this forum. You are trusted as a medical professional and have an excellent way of presenting the information that helps soothe the mounting worry and panic. Your point about the questionable consumption of research is well taken. The media are a good example of this. They will often take study results and make broad causal statements about findings that only suggest relationships between variables. So, many folks with BFS are not surprisingly going to struggle with similar problems regarding their use of the literature. It seems to me that the best data we have about BFS and how it is uniquely expressed in our own individual bodies are what the physicians who examine us tell us. As you pointed out, they do know a lot about disorderssuch as ALS and MS and how to rule them in or out. Their knowledge about BFS is limited by the lack of research in this area. But they know plenty about the more sinister illnesses and how to diagnose them and we can be reassured by this. From what I can see, the current state of the data on BFS is more descriptive and correlational (meaning defining the characteristics and identifying variables or factors that seem related to BFS) and not yet to the point of being based on predicitive models of statitistics that are used to determine with more confidence an actual causal relationship between factors. Then of course, comes treatment studies designed to test the effectiveness of certain medications on our benign twitches. Right now, the data our physicians draw from are based largely on anecdotal clinical observations and so the results of treatment will be hit-or-miss for each of us as we attempt to resolve our symptoms. Further research will provide further understanding but the research is in its very early stages right now. Our physicians do their best to help us based on the status of that research. But again, as you pointed out Kit, they DO know all about the very stuff we fear and they have determined we do not have those things.We want to know as much as we can about BFS/BCFS because we understand that knowledge is power, to some degree. But what we can know about the beast (BFS/BCFS) is limited at present. By definition, we have been told that what we have is BENIGN. This can be said with confidence by our physicians because we have not exhibited signs in a clinical exam or through laboratory results anything that suggests something more "malignant". So we gather at a forum like this to seek reassurance and to support peace and calm in one another's minds and hearts. We can do this by sharing information but it behooves us to proceed in this regard with the utmost caution. And thankfully, we have physicians among us who can help sort out the confusion when it inevitably broils up.
 
Thanks Cindy!What a terrific post! I too WILL NOT go the those sites either. And yes I have wasted way too much time worrying and not really living!Kind regardsSandra
 
In terms of the person (twiched for a year then ***) mentioned in the original post, that case has been discussed here at length on more than one occasion.The patient in question had episodes of falling over before being diagnosed. Moreover their EMG findings, while deemed "normal", seemed to have plenty of suspicious signs other than fascics (these appear to have put down to age, etc.)Even papers that discuss whether fasciculations can precede weakness and EMG findings in *** seem to accept there are only - literally - a couple of cases, in all of medical history, that suggest this might be so. At any rate, these cases are (a) contentious, and (b) nothing other than _possible_ counterexamples to the received wisdom. In other words they are cases aimed at health professionals that are supposed to pose _academic_ questions about the disease process in ***. They do not claim the received wisdom (no weakness/"good" EMG = no ***) is wrong; they merely ask whether it is ALWAYS true in ALL circumstances.I don't read studies these days. I used to do so when my anxiety was at its height. Certainly, I _never_ had the medical training to understand and contextualise them fully. So the question is: what was I really looking for? Something reassuring - or the opposite?So, to summarise: well said, Kit.
 
As I see it there is nothing wrong with reading these medical papers. However, you need you're head right, for want of a better way of putting it. You have to be aware that if you start reading medical articles you may well find info that doesn't make for pleasant reading, so if you are of an anxious disposition - stay clear.The other thing to take on board, and I've said this before, is that these papers are written by Dr's for Dr's they are not intended for public viewing. They are published to further educate Dr's, and to raise awareness which ultimately should be of benefit patients.Also don't forget that without the likes of us, who have little known disorders, research would be impossible, obviously. Consequentially, without research there would be no progress in understanding these disorders, diagnosis would remain in the realms of exclusion, and patient care and management inadequate at best.Fact be known. The fascic's that are experienced by us all, are available in all sizes from S up to XL and a variety of shapes and colors , if you get my meaning. Hey D75. Good to see you raising your head up now and again. Your posts where always recommended reading in my opinion.Steve Paul
 
When I went to see my neuro, I told him I was concerned about ***. He did the exam and told me "you don't have ***" so I was happy. he also made a comment about the number of people that present with twitching and are diagnosed with *** is very very small. Usually people report weakness etc. I was concerned as my dad died of *** and my neuro told me that the stats about familial *** were exagerrated so that they could continue to get funding to do research.Now my symptoms have moved on from just twitching, to pain in hand, muscle pain in legs constantly (very sore) and pain in neck, I am waiting for my next neuro appt on friday to see what he plans to do to diagnose. I was diagnosed with an Ulnar Palsy so that needs treatment anyway but I want MRI next.SO all those people that worry they have *** just because they twitch...you do not have ***...or you would have noticed other symptoms by now!!!
 
I agree with you guys the last few months this site has become a bit negative and scarey.Almost to the point where your to nervous to log on.Lets get back to helping each other out by sharing our BFS experiences,and reasurring each other that we are OK, and we'll over come the fear and anxiety.I dont read Had posts because he wants to be scared and to scare people thats what makes him feel better
 

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