Discussing Bulbar Diagnosis Differences

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I can tell you with 100% confidence, from years of experience, that tongue twitching in BFS is benign. 5 years here of tongue twitching and bulbar emg and it's all benign. You don't need a bulbar emg, if your twitching in limbs were from ALS the emg would find. I've been in the cycle and know the fear, but from the outside it sounds like a conversation between crazy people.
 
Seen this all before... Please remember that everything you read here and especially on complicated scientific concepts are the opinons of lay people who even with the best of intentions are not qualified to diagnose your problems. Listen to your doctors... They have been studying this stuff intensively for longer than anyone posting "scientific" opinions on this thread.No weakness= No ALSALS is a rare disease if you want to spend your time worrying about a rare presentation of a rare disease then you need to reevaluate your life... Trust me Iv been there.Darr
 
Hello,Just to say please don’t think I am being rude, but I can’t really answer anymore PMs regarding the scientific questions. This is because as Darr rightly pointed out to me, technically in the field of neurophysiology I am a lay person. My doctorate and 18 year career is in Immunology and Clinical Immunology (immune system disorders), and although this does encompass a field called neuroimmunology (prion disease like vCJD, etc), primary neuromuscular disorders are NOT my forte and I doubt we spent more than a few days on the subject, I have never performed an EMG and never interpreted one. Anything I know about them I have taught myself from medical books, not from experts directly. So yes I am a layperson.Of interest I did take a career break and worked for a scientific publishing group where I had to read articles of all disciplines and discuss, i.e., comparing the findings between them. Again although this involved a good knowledge of many medical disciplines I only ever worked on one ALS paper (one that was questioning if it was actually a manifestation of a prion disease, absolutley nothing to do with diagnosis, EMGs etc). This does not in any way make me an expert. In addition I worked on a panel which scrutinised applications for medical funding, but having an immunology background I got most of the funding applications from rheumatologists and other autoimmune conditions. I rarely dealt with any neurology except when there was a clear cross over with immunology.So yes part of my training and career is about pulling apart science articles, finding flaws looking at concepts, experiment design, hypothesis and statistics, but again I emphasis not specifically neurophysiology. It is like getting an ENT specialist to look at the kidneys, he knows the basics, more than say a banker, but not the whole picture.So what I said in my posts is my opinion, not an experts.Of note though Darr did say Quote "" they are not qualified to diagnose your problems" I can honestly say in all the posts I have ever written I have NEVER attempteds to diagnose anyones problem.... so not guilty as charged to that bit. I would never have crossed that line....and I certainly did not try to diagnose anyone. Apart from that I do agree with much of his post.So yes my intentions were right but I am technically not qualified to factually answer yor PM. Hope you understand.. ….besides it will mean I can stop running up and down the bloody stairs to the poor neurophysiology department bugging them . It is up 4 flights of stair (silly place to put it for people with muscle disorders but that is the NHS for you). Anyway 4 flights of stairs sure started off my fasciculations. Like many of you I also have several young children and I feel sad when I see them walking around on their heels ( doing mummy’s funny walk), or seeing how many stairs they can jump, or how many times they can squeeze their water pistols with each of their fingers. They also play hunt the fasciculations on my arms face etc. All innocent but inside I feel myself breaking with it. I try to hide it from them but they pick up don’t they. It is amazing how this fear can make you push away the very things you fear losing the most. I hope you have better luck controlling your fears than I ever did.Helen x“Millions saw the apple fall, Newton was the only one who asked why?”
 
I am no doctor, but I know FPs are detected often in people without BFS. I spoke to a neurophysiologist who works with me at my college and she said muscles twitch because if they didn't, we'd all be paralyzed, or something to that effect. Muscles are always twitching at the microcellular level whether we feel it or not. Yes, the way we twitch where we feel so many of them does indicate that we have a lower FP threshhold than non-BFSers, but it is most likely due to an intracellular dysfunction caused by a combination of things, including a possible genetic predisposition. The bottom line is, and always will be, twitching by itself is harmless and possibly a NECESSARY function of muscles. In other words, there is no way to stop muscle twitching because if you did, you'd be long dead. That being said, I've never once worried about having MS or ALS since I started twitching. Maybe I was lucky enough to have a severe explosive onset of BFS after a very traumatic run with excessive stress, sleep deprivation, and a nervous system gone awry. I just knew it was nothing nasty. I did fiddle around with the idea of it being autoimmune at one point, like a mild form of neuromyotonia, but my neuro reassured me with autoimmune disorders, you'd see an elevated WBC etc. and I had none of those presenting factors, so I didn't have to worry about that either! I feel like spending all this time worrying about ALS is a waste of time. I know a guy at the karaoke bar I go to who has ALS and he cannot move. He is in a wheelchair and is going to die soon, according to his docs. He's only had it this bad for a few years, and **** ALS progresses fast! CLINICAL WEAKNESS (weakness that is so severe you wouldn't be able to sit here and type on this forum!), I repeat, is the presenting factor in ALS and NOT twitching. TWITCHING MEANS NOTHING!!! If it means anything at all, it means YOUR MUSCLES ARE FUNCTIONING PROPERLY. Your "twitching" is just amplified due to a BENIGN intracellular dysfunction. You will NEVER be able to find the cause or causes of that dysfunction. NEVER. I would bet my life on it. People worrying about ALS all the time need to go to a psychiatrist and get treated for their ANXIETY which is revving up an already revved up nervous system. ANXIETY is the problem. I had 8 neuros tell me the same thing. Yes, I got diagnosed with RLS too, but my problem was, still is, and will always be dealing with my ANXIETY. My ANXIETY even caused me to have a plethora of food, light, and scent sensitivities. I developed "environmental illness" from having so much *beep* ANXIETY. Time, exercise, and accepting you have a benign condition are the only things that help. That being said, my main struggle with this BFS condition is how ANNOYING the twitches are. I realize that there is nothing I can do to make them go away, but they annoy me a lot sometimes and I wish I could reduce them. Instead of us wasting time worrying about ALS, I feel like we should try to focus our efforts on trying to get the medical community to follow in the shoes of Dr. Thamoush and try to develop more effective treatments for reducing the amplitude of our twitches. Kinda like they've done with headaches. BFS is benign just like a headache is benign, but there are effective treatments for most headaches. The only thing that is definitely not benign about BFS is the anxiety is causes as well.So, as I see it, we cannot disregard the fact that BFS is very annoying and the psychological battle with it is the most annoying part of it. Treat the anxiety and maybe you won't care about the twitches anymore? That works for most. But there are others who find symptomatic relief from some of the meds out there. I see nothing wrong with either approach. I'm still on the fence as to whether or not I'm gonna give meds like Lamictal a try some day.
 
People seem to "hang" on clinical weakness. You get diagnosed when you have clinical weakness but MND could be lurking for sometime. MND can sneak up on you. But not how 99.999999% of the people on here explain. Jumping around on -1- leg to test weakness, or doing push ups sometimes -1- handed, or feeling tire after a walk, not the type of weakness. It's not like that...not the weakness you think. It's the very subtle things, like one day you notice your left thumb can't press as hard on the remote to disarm you car, or you right hand can't open the jar on the peanut butter, or you find yourself tripping over things more often...now don't freak out, if you've been jumping around on -1- leg and you start tripping it's because you never jump on one leg and you are using muscles you've never used.......Be concerned when one day you notice that you can't do a function you could before and you are twitching. Atrophy and clinical weakness take sometime.It's not the flash bang described here, one day you walk fine, next day foot drop. Lot's of subtle changes.So again, don't go freak out. People use the term perceived weakness. It's a crock, it's not weakness. Steve Gleason noticed something was wrong when he attempted to do pull ups and struggled to do 3 when he could do 50. I would bet he had lot's of signs prior to that. Lou Gehrig may of had the disease for longer that initially thought. He couldn't hit the baseball as well or field as well, but he knew there was something wrong.You will know when you have weakness, very subtle, but you know when you heart skips a beat..........you will know. You won't need to ask someone or prove to yourself there is no weakness.
 
Apologies. I have to admit I disn't read all the posts on this thread. My post above was general advice and aimed in the main at twitchydoc who with the best of intentions has a long and coloured history of posting scientific facts he is not qualified to interpret as gospel.No offence was meant.
 
Darr, as a neuropathologist I am more qualified than regular neurologist as I professionaly deal with disease processes.I am not surprised when you said you had not read it all - that is typical in people like you. Helen herself mentioned thath my explanation/science was better then hers but yeah, you did not read it, you only complain. I wonder how simple some people can be.
 
Here is one further medical fact to add to this fascinating discussion. If you have widespread twitching and have had a clean EMG of 4 limbs between 3 and 6 months of onset then the chance that you will die of cardiovascular disease is about 30% :)My point is that you may well do better going for a run than becoming worried about the nth decimal place risk of ALS (and I've read the scariest papers and the scariest comments here and still conclude that is what we are talking about for anyone who has seen a decent neurologist.). GlowGreen
 
What a "mature" post! And yes, you are 100% right: "we cannot disregard the fact that BFS is very annoying and the psychological battle with it is the most annoying part of it...".Twitching may be severe enough to be really annoying and disruptive. You really would like them to stop. Yesterday evening, when my jumper was pumping above my left shoulder so that my wife could pick on it being a couple of meters far away, or this morning when the left leg could not stop pumping and stopped me to get a couple of hours of deserved sleep...I also do undertand Twitchydoc. He is trying to present facts and he is puzzled by what has been described as a "preclinical phase". But, I bet, himself could not find much evidence of it looking at patients he may have encountered. In all cases, I am sure, there was something else ongoing. Namely, weakness. Perhaps, not severe, but there...Or, abnormal reflexes.I am not making any criticism. In fact, I argue that if you study a phenomenon, you always HAVE to question: why is this happening. How does it start? When doe it start? In other words, I welcome the input Twitchydoc has always been trying to give to this board and I can see sense in all the above posts as well.
 
Gracely, LittleLost, Edado69, ftheatre: Thank you, I appreciate you understand that this problem needs to be investigated and that it is not my fault if the inputs are not what we would like (I like the "shoot the messenger" analogy Helen used ;)ionyZarrion: Again a very intelligent reaction...thanks, your contribution to this forum is invaluable...
 
Having read all this one thing I would say is I like the fact twitch doc tells you how it is it's good that you know you will get an honest opinion which is what I am after when I'm concerned
 
Yualiasir: I said "IF the findings".. and why I think so? Because obviously some people do not like them/do not understand and attack me..so I assume were they good, it would not happen.
 
well, JUST IN CASEour fellow TwitchyMD privately noted to me that I am not exactly right and that people with generalised fasculation are considered as a risk group and should be followed up.which is still Ok for me becasue I WAS FOLLOWED UP FOR 9 months. Had to confess that 1 year was planned but I skipped last visit due to the fact there was no changes in my condition.it is 2,5 years in now for me.I twitch (less than before but still in my thumb, eyelid, legs, deltoids and, well, secret places sometimes). I have cramps sessions, sometimes severe, mostly in legs, but sometimes in arms, rib muscles, deep abdominal muscles (or even it may be uterus becasue the pain is well resembling uteral contractions). But I am clinically able and still fit and operational. I also have tunnel like issues - pain in elbow and wrist, numb fingers (much decreased since I started to do simplest workouts, 8 minute mini gyms)Same are tons of people registered here and practicing 'lifetime followup' coming and saying that they are OK in 2, 3, 5, 10, 40+ years. Some come and say they are worse after a long period of more or less fine being. But still usuaully they come later with the same results of clincial/other exams - BFS.Dear fellows,I strongly encourage all of us do not attack on TwitchyMD, please. He really has no idea to freak anybody out. It is our fear and anxiety which makes us blind to a simple but precious finding we have here in our community. It is that the reality is still in favor of vast majority of BFSers. Yes we are in risk group (most of us are in the risk groups for cancer and cardiovascular diseases too, and this is probably what would kill the vast majority of us once). But we form those probably 90+% part wich are happily escape anything drastic (except spoiled lifetime of course).everybody have a good daywith best regardsYulia
 
Thanks Yulia. I had to add what I mentioned is quoted without any changes or interpretation from my side. Just pure findings from recent studies. So please do not even bother accussing me from misinterpretation.The basic fact is unchanged - without any neurological deficits and clean EMG, usually several months exludes the MND diagnosis.
 
Great summary Garry. I would also suggest one more:5. Of that very small percentage of cases, are they absolutely certain that any twitching initially observed was in fact directly related to MND, and not a co-existing condition?Cheers,Bill
 
BillBob: I cannot answer these questions because the best ALS experts cannot :) But given the rarity (see Al Awaji, MND: Synthesis of research or simple fact that very few cases were described) of frequent and widespread fasciculations, it is statistically impossible that a person with widespread fasciculation would independently develop ALS.As you ask for numbers:In his MND bible, Eisen mentioned that out of 212 patients, 30 had fasciculations as an isolated, initial symptom of the disease. Several of them had normal EMGs. By the way, it was A.Eisen who disputed the Mayo study and added that 6,7% of his patients presented this way.Mayo study authors replied and explicitly stated that it matched their experience and a clean EMG is needed.The BFS study I helped to organize with ALS experts was aimed to answer or at least specifically deal with these questions. The only way we can get close to real answers is to participate, even though we are just secondary data. But during a year they gathered only a few patients (London, Lisboa, Vancouver AFAIK).Really I wish I could answer these questions and so are other researchers but obviously this topic is drawing more attention (based on the fact how many articles dealing with FP and excitability has been published).But this is unknown land and we know that sometime BFS progresses to something worse than BFS but benign (they called it non progressive anterior horn cell disease).I repeat, if you are really interested, join the study and help them publish serious paper. Not because of me but for the sake of all neurologists and future twitchers.
 
ftheatre: it was not stated explicitly but as only several of them had clean EMG, I assume the rest had some signs. They said the mean time between fasciculations and weakness was around 6 months (3-11 if I reemember correctly).I really cannot tell you more, I do not know and obviously nobody knows. The bottomline is - clean EMG is still a golden ticket and this has not changed.
 
Keep in mind that just about every neurologist will tell you that if a patient comes in with fasciculations and no other clinical signs it is not even necessary to do an EMG. I know both my neuro's said I didn't need one.
 
Gary, while I see your point, it is quite simple to prove that BFS and ALS in an unfortunate person are related - in the man whose BFS bridged BFS but later the progression arrested, it was demonstrated over years that his motor unit count decreased. Though his clinical was clear, the EMG clearly showed the loss.It is like the Walton study, you really believe that they found 4 people with BFS, all of which accidentally developed ALS? The most important proof is that these patients have fasciculations (one example) in abdominal muscles mainly and this is the place where years later the weakness occurred. I mean, these doctors and researchers are not stupid not to know about possible co-morbidites. These electrophysiological changes in the affected areas clearly showed there is a relation and that is why they can be certain there is a connection.As for the rarity, it is hard to believe that someone whose fasciculations would be so frequent and widespread would never be reffered to a neurologist. I can only speak for myself but I found it really distressing and uncomfortable when my arms started to jump.
 

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