Finally Got the All Clear from Neurologist

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GeoffWab

Active member
After waiting nearly 9 months to see a neurologist, I finally got the all clear.After the evaluation was formally over, we had a frank discussion. I started to ask him questions, and he stopped me right away." I can see that you are all ready doubting my diagnosis," I told him I just wanted to understand ALS, he allowed me to continue.After asking the questions I thought would ease my mind, he gave me rather frank answers, that to sum up, ended with him saying "ALS can start however it wants"I told him then about the advice I found online, he immediately seemed to know what I was talking about. He said to me "you need to stop the focus groups, this is what creates the doubt" he said he had seen many like me that also that many did not believe their diagnosis because of what they read in focus groups.He told me spotting ALS is like bird watching, to the average person, it may be hard to tell the difference between two very similar birds, but to someone who studies birds, the difference's are huge. He also said that there is a large grey area in diagnosing ALS, he would not elaborate on this For this reason he will always do the EMG. He was stern with me for receiving non-medical advice, and putting stock in it.Some will take this post as being intended to scare people, or say its not true, I had a good friend, also a BFSer listen in to the whole thing via Skype.
 
Nothing new under the sun, if medical studies did say "ALS never ever begin with fasics only, NEVER" then I am sure this board would not even exist. The facts are it could happen, despite being really really rare. The board is here to give some hope for scared people like me and others, and is working perfectly. Even your post is quite reassuring since after 9 month you just had an "all clear" meaning that twitching for 9 month doesnt imply anything sinister.
 
Why should anyone doubt it? We have had so many stories on this board where doctors scared and freaked out people, so why should a "I need an EMG for final proof" scare anyone? Doctors are humans after all. Knowing your story and your symptoms, the alterations and the typical feelings and BFS, I can tell you: the EMG is in your case absolutely not necessary. You have BFS, this was clear right from the beginnings, your story SCREAMS BFS and so it does for all those that are about to freak out now. If your neuro needs the EMG, well, then he needs it. I don't ;)
 
I love that he calls them "Focus Groups".Really shows how internet-savvy and up to date on society he is. Not.Cutting you off? then allowing you to continue ... Great bedside manner. You deserve respect. Indicates arrogance. The biggest disease to infecting doctors on the planet."You doubt my diagnosis". Confirmation of arrogance. You're the one experiencing the fear and discomfort. The least his highness can do is shut his trap for 10 minutes and let you express your feelings.PS: Dont wait 9 months for a neurologist appointment next time. Nobody should be subjected to that kind of torture. If someone's not available, call another hospital, and then another one, until you have an appointment set up within 2 weeks.
 
P.S. Bfsburger, did you honestly think I voluntarily waited 9 months? I called every hospital within a 9 hour drive of where I live to try and get an appointment, none would take me without a referral, after getting a referral, the wait was 6-9 months, again, I called and was told I could not get an appointment any sooner.Your summary / break down of my doctor being arrogant couldn't be further from the truth, I didn't find it arrogant, I found it re-assuring, but you were there too, so I guess you have the right to sum it up as arrogant......NOT.You doubt my diagnosis - yes, I was looking for answers to reaffirm his diagnosis, knowing that I would later on, most likely doubt it.why the criticism of him calling it a focus group? It essentially IS a focus group. And others have stated the need to break the seeking of reassurance on here as well.
 
Jon, glad you finally saw a neurologist. What in the end did he say about your symptoms? Did he say anxiety, bfs, etc? I think we've all had a broad spectrum of things in our time. I couldn't tell from your post if you felt like that was enough to move on.Timm
 
Timm, he said Benign Fasciculation, he didn't elaborate on any causes or otherwise.Seepi27, I think you are right in that a clinical will clear a grey area, but there are variants of ALS that involve twitching that do not get picked up in a clinical, that need an emg to diagnose (and I'm not talking about UMN damage only), and that's why he said he always does an emg.As for the chat room and the board, seepi27, they got me through a very tough 8 months. Although, I have read far too many scary things and its time for me to disappear online as it where, I'm determined for no more set backs, after reading tobes post, even though he made it clear he did not have ALS, my mind automatically thought, well, if they misdiagnosed him with ALS, maybe I could be misdiagnosed with BFS. Just my screwed up thought pattern.
 
So if he allways runs EMG, did he run one on you also? You mention only clinical?I don't find the statement that ALS could begin with anything very reassuring. It implays everything and one should never use such word. Becuase everything means also: "Twitching 4 yers before weakness", but we know that is not true. EVen in interpersonal relationships we should not use "naything, everything, never etc."I am glad it doesn't scare me as much as it used to, because I am getting quite used to doctors scaring patients from my experience and as I see now, I am not even remotely alone, Tobes story on top of it though. I don't think that ALS can start with anything though. You can have headaches a year before but this is not ALS, this are headaches.I am quite frankly tired of doctors that cover their back with the scary "nobody can never know" statements, just in case. Even from Tobes post, at the end, if anybody noticed, there was not a "you don't have ALS" statement, it was merely a something like "you don't seem to have it". Just in case I guess.I think one should NEVER EVER ask a doctor if you can have this or that. Because at the end you always can and that makes a experienced lab doctor different from an experienced compassionate doctor. There are statements that also cover him, but makes a person much more calm, like: "I can not tel you for 100%, but from my experience it doesn't present this way and I am 99.9% certain you don't have it". WOuld be much better and in fact good enough for me if I ever received such statement from a medical proffesionalist.Seems there are much more false positives and false "you can also have it" than false negatives. I have yet to read about someone who was diagnosed with carpal tunnel and in fact had ALS.
 
well, jerry, as soon as you could still perfectly use your hand at which muscle bulk is much less than on another one - I think it is either not an atrophy in its pure medical understanding - just plainly bulk loss (because atrophy also means that the muscle is useless), or you might really have some cause to have less muscle bulk, including certain artophic processes (have no idea what it could be really), but they did not progress then and your body made a good use of what it has. Again, even mr. Hocking have had to cope with progressive paralysis and loss of virtually all muscle mobility, however much slower than in regular ALS, but still in few years he went from a cane to wheelchair, then to gastrostoma and voice synthesator, etc. etc. Which never happens to BFS, as we know.Until your lesser arm is working well (holding things, making fine jobs etc.) - it might be still healthy arm in common sense. And this is also a good example of things which could not be so obvious from the first sight and need some deeper consideration. Not every less bulky hand is atrophied - it is important conclusion I can make from your case.
 
Yulasir, I don't know why you would contradict someone with years of neurological training? The Doctor I saw, told me that it can start however it wants, after I pumped him with questions re: how can ALS start. I asked focal v widespread, on and off v. constant etc. he said there are no rules, it can start however it wants. But I do not know you, you could have years of neurological training true, and if that is the case I apologise.ALS does not always move quickly to paralysis, there are numerous reports out there that document this, including some infamous ones that provoke profound anxiety, so I will not mention them, needless to say that twitching can occur for a significant time, however, if one has an emg, there is no need to continue to worry.Jerry, I appreciate you trying to pick holes in my story - but yes, I did have an emg, 3 limbs, left arm, left leg, right leg, and an NCS.
 
I now ask you straight away..was THIS an ALS expert? I mean not a "normal" neurologigst that has seen a few ALS persons in his life, but is HE the one seeing ALS patients on a daily basis? Because those that ARE the reals ALS experts lean towards: twitching before weakness is rare, if it appears at all, then it is in most cases localized, constant and the best US ALS experts as well as Germanys leading ALS clinics report that IF it starts with twitching at all, then weakness will usually follow shortly after this. Paresthesias, weird sensations, myoclonis jerking, tongue biting, jaw stiffness, globus sensations, vertigo, tremors, vibrations, pain and the rest of the BFS symptoms list are such strong indicators for it being benign, that they do NOT recommend an EMG for just a bit of twitching.If that doctor seriously thinks that it is necessary to stick needles into someone for this reason, then he has a different view on this than the ALS experts. Because most doctors do it to calm down their patients, while they themselves know that the chances this patient has ALS are so incredibly low, that it is actually a waste of skin desinfectant to do the EMG. So up to now, we had 1 out of over 4000 members on this board with a clean clinical onset while he had a bad EMG. In this only case, this person was diagnosed with "a MND" , not ALS, and he is still running around and visiting foreign countries and has no clinical weakness. So actually in this one person that was given this dx in spite of a clean clinical, we do not even KNOW where it all leads to. In all other members that had an EMG, a clean clinical was followed by a clean EMG. So it is up to everybody to decide for himself, if a chance of 1:4000 is worth the pain of the EMG, as well as the fear that can be created like in tobi`s, daniels or victoria`s case. Totally healthy young people whose picture showed a clear BFS pattern, that wanted to have that extra-bit if reassurance from an EMG and were sent to hell an back. Because false positives are more common than you think they are, especially in cases of BFS where an extra-tension of the muscles can make it harder to get a quiet EMG finding , and this restlessness can be misinterpreted as nasty stuff. Didn't I want to take a break....Actually I wanted to...but I just did not want to leave this post hanging here as the "death sentence" to fellow twitchers without EMG , as which it will be interpreted by their anxiety. You know, when we were talking about your symtoms, that I am not the one to say "never" , but I use words like "usually" and "most cases". I know that nothing is impossible. But just because something might be possible, it does not mean that it is likely. And in your case and the cases I have been reading ans answering lately, ALS was not unlikely, it was so incredibly incredibly incredibly unlikely that I am willing to bet anything on it being BFS. I have learned a lot about BFS and doctors in the last 4 weeks.
 
Jerry, I asked him about the emg, and its diagnostic worth, you already know the answer. You are clearly anxious still, and still scared to get the emg. my point was that my neurologist advised me to stay away from focus groups, after discussing the information contained in the BFS board that causes anxiety, (which apparently my post has) you in your anxious state seem to have missed this, I think you more than anyone can benefit from this. And who the hell are you to tell me that 'i wouldn't dare do' something, because it will go back to making me anxious? I know the emg is not 100% accurate, anyone with half a brain knows this, there are any number of things that could go wrong, from a faulty machine, to a hungover neurologist, am I less anxious for having an emg, yes, definitely, am I passed the ALS fear? - almost. Are you still a bumbling anxious mess? apparently. having worked for a period of time in Medical Malpractice Law, I have seen doctors make the worst mistakes, I know more than anyone that nothing is 100% sure. The Neurologist who examined me discussed my profession with me at the start of the clinical, which, I am sure made him more cautious in what he said, it usually does.Re: ALS can start with anything - Of course ALS has a pattern, but there are common exceptions to the text book pattern, if there was only the text book case, we would not be anxious, my statements were made in relation to the type of twitching, location of twitching, frequency of twitching, your analogy that ALS cannot start with a headache is likely true, but puts the neurologists statement out of context. As is common on here, people twist things round. Chrissi, yes, he is an als expert and is the doctor people go to for 'second opinions' on als diagnosis in Ottawa, your post is 100% correct, and I should have considered those without an emg before posting. my apologies. "You know, when we were talking about your symtoms, that I am not the one to say "never" , but I use words like "usually" and "most cases". I know that nothing is impossible. But just because something might be possible, " - I wish everyone took this approach Chrissi, there are too many " i guarantee you do not have ALS" on here. Thank you for all your help also!!!!!! (this is a genuine thank you, im sorry if it reads sarcasticly)!!!!!!!!!!!!!!!!!!!!!!!!
 
There's no guarantee, for nithing in life...but if I look at the overall picture in most cases, a conviction that is so big that I would bet anything on it. I have people I do tell: you don't have it. Because I know it. Because I am so damned sure about it that I can risk rotting in hell for being a liar ;)
 
Yes christinasgirl123 and if I remember correctly I am one of those who you told I don't have it. I find it frustrating that you are probobaly (well, I hope so!) more right than the doctors (not that anybody suggested to me I have something bad, but they didn't clear me either). So I hope I have BFS and you don't need to go to hell ;))
 
If I was a doctor in the USA or Canada ( where apparently everybody can sue everone for anything), I would for sure bring up all irregularities, extreme exceptions and highly unlikely stuff that MIGHT happen to cover my ass, if a patient walks in mentioning he is a lawyer ;)Anything can start in all possible ways. A friend of ours just had some strange throat issues. He is a private patient (we have a 2 class health system here) so he is in the "better" class and doctors love to run all kinds of test on those people because they can make a lot of money. In the end, they did a intracardiac katheter check and found out that 3 main vessels around his heart were almost completely blocked, so he needed a triple bypass immediately. So in this case, kind of a sore throat was a predictor to a heart attack. But would that mean now that all patients with a sore throat should have a intracardiac katheter check? Because-unlike the EMG-an early discovery of the disease can save a life...a brain tumour can start with a slight headache...should all patients with a headache have an MRI to check their brains? I am not "against" EMGs, OMG, I had one myself in my early days. But after what I have seen and learned on this board, I would say that my EMG was unnecessary and a waste of money. If a member thinks that he or she needs the EMG to feel better, then he or she should have it. BUT I actually have yet to see one person on here that is very very anxious and doubtful before the EMG, gets cleared and never again wastes one thought on ALS. A "normal" mind will accept the "you don't have anything sinister" after the clinical. An anxious mind will start to doubt the EMG. And apparently, there isn't too much in between those two extremes. Your post actually created fear amongst people without EMG or whose EMGs are long ago. To some extend, because the perception of BFSers has some kind of shift, that turns a..."ALS can start however it wants" into "OMG that is me, I am doomed". A twitching friend of mine recently told me I have a strange behaviour when it comes to terms of talking about BFS...I seem to stop within my sentence, seem to do something rolling with my eyes, lay my forehead in wrinkles and then go on formulating sentences...I guess I look rather stupid doing this, but in fact in those seconds I think " OK, this is an absolutely harmless information, but could it have ANY infomation that could meake the ther person think he is doomed when my phrase is re-shuffled by an anxious mind...".So at least it is worth a try to consider how information can be packed without scaring others. I know it is hard on this board. I hope noone in here right now has a cold and now thinks he will have a heart attack tomorrow....btw. But I think we owe it to each other, to bring across relevant infomation, not lie or censor, and still think twice about what kind of formulation we choose. I try but still struggle, because anxiety days are quite far away already. But it is worth a try.
 

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