Okay I had my follow up appt with my neuro yesterday. I didn't learn anything groundbreaking, but I was able to ask him a bunch of questions off my list. I even gave him a copy of "BFS in a Nutshell". I said that was pretty much considered the "Bible" that a lot of BFS people on the internet use to reassure themselves, and I was curious to see what he thought about it. I wanted to know if an actual neurologist would actually agree with it. He told me he had never been to bfsforum.com before, but he seemed interested in seeing what a layperson would say about stuff like this. So he took it and said he would give me a call once he had looked it over. I'll let you guys know if/when he eventually gets back to me.From his reaction, I got the sense that doctors don't read "layperson" medical advice very often. And do you know what? I was happy about that. Because remember. We aren't doctors. And doctors aren't us. We speak a whole different language than they do. All I had to do was sit there and talk to him about BFS for 2 minutes, and this became crystal clear to me. He actually had to think about and second guess every word he was saying to me. He had to be careful the way he talked about this. Because if he hadn't done that-- if had just used his normal way of talking-- you or I or any layperson wouldn't have had a clue what he was talking about.So anyway, just keep that in mind the next time you think you can diagnose yourself over the internet. You can't. Neither could I. Only a doctor can do it. And doctors look at the world a wholllllle lot differently than the rest of us.Here are the answers he gave to my BFS questions (as well as I can remember).-------------------------------------------------------------------1. In your opinion, is BFS an actual condition, or is it just a fancy name for "heightened nerves"? His answer to this was that yes, BFS is real in the sense that the symptoms are real. But as to "is it a disease?" and "do all people get hit with it the same way?" he didn't think so. His theory was that people just feel reassured when they can say "Oh I have X disease", because it's easier than just rattling off symptoms and saying you don't know what is causing them. So for him, BFS is really just a matter of convenience. "You have BFS" just means "You are twitching but nothing is neurologically wrong with you." I got the sense that, to a doctor, that's all that he really cares about. Do you have anything seriously horrible happening with you? No? Then you don't need me anymore. In my opinion, that's how a doctor tends to look at things like BFS. It's not very high on his interest radar, because there could be a million causes for it, and none of them are life threatening.He did mention to me one interesting thing, however. He said that a lot of muscle twitches are caused by lack of oxygen. People who get stressed or anxious start altering their breathing, and this in turn causes hyperventilation. And once you hyperventilate, your body starts producing extra adrenaline. And this, you guessed it, causes all sorts of weird muscle effects. So he pointed the finger at hyperventilation for a lot of weird muscle twitches. Which is interesting, because I have read a lot of very similar statements on this very board saying the exact same thing. BFS shares a lot of common symptoms with chronic hyperventilation. He didn't flat out say "twitching is always caused by hyperventilation", but that was the insinuation he was giving me. The implication was that if you are stressed out and anxious about things your body is doing, the very first thing you should concentrate on is your breathing. 2. A lot of people with BFS seem to report pain/burning/achiness in their legs. Why do you think this happens? Is there something actually wrong with their muscles? Or is it caused by unuse/sedentariness/lack of exercise/etc?He actually surprised me with his answer to this one. He said that the type of pain I was describing (random burning/achiness) probably wasn't even BFS at all. He said that it sounded like I had some weird compressed nerves that were happening because I spend most of the day sitting down. He said there are two nerves that run down the side of your legs (I forget what the names were), and they are very superficial. So if you have bad posture, or you slouch, or you don't stand up and walk around enough, you can compress them. He said that postural issues lead to a lot of weird jelly legs/leg pain issues. He said this particularly happens to pregnant women, because when they get bigger, things in their body start compressing against each other. I asked him if that would explain why my legs can be heavy one day, and not heavy the next, and he said "Well you sit a computer all day. Pay attention to how you sit."3. A lot of people read Alonzo's "BFS in a Nutshell" and kind of consider that the Bible of BFS literature. What do you think of it? Would you support just about everything that is written here?Like I said, I gave him a copy of BFS In a Nutshell, and he seemed interested in reading it. He seemed fascinated to see what it would look like when a lay person tried to write about a medical condition. Again, I got the sense that isn't something doctors see every day. He said he would look it over and he would give me a call.4. How can I go back to bfsforum.com and reassure people that what they have is benign? What would you say to reassure people?He basically said that pretty much all fasciculations are benign. That's kind of what a "fasciculation" means. A random muscle spasm. In fact he was so underwhelmed by this question that I almost felt bad about asking it. The confused look he gave me when I asked it sort of said, "Um, why on earth would people need be reassured?" Again, it's just one more reminder of the way doctors look at the world differently than we do. Going to a doctor and saying you have a muscle twitch is like going to a doctor and saying you have a cold. It's like, okay, so what do you want me to do about it?5. Are there any specific vitamin supplements/tests/viruses you think people should be looking into as a cause for what they are feeling? What have you found to be helpful in the past? Is anything helpful?I didn't specifically ask this question, but from some of his previous answers I can tell you what he would have said. He would have said "almost anything can cause muscle twitches. Don't worry about it. That's just what happens sometimes. If I tell you you're fine, then you're fine."6. Secondly, is it even worth pursuing a "cause"? Or do you think that quest just leads to more stress and uncertainty? Is just knowing that what you have is "benign" all that a patient should really care about?Ha ha. I knew what his answer would be to this one before I asked it. In fact I can repeat our whole exchange almost verbatim.Me: So do you think it's actually worth pursuing a cause? Is it worth spending all that money and time just trying to get to the root of what is happening with me?Doctor: How would you answer that?Me: I've decided I don't really care what's causing it.Doctor: Well then there you go.7. How often do you see "twitchers" and BFS people in your office? Is this much more widespread than people realize? This answer surprised me as well. He thought about it for a moment and said "No, not really." Now whether that means "This isn't a real illness" or "Don't worry about it, this is nothing," I have no idea. Again, he seemed completely unconcerned that anything was actually wrong with me, so it's possible he was just using psychology on me and trying to get me to shut up. I have no idea. All I can say is that it seemed tremendously odd to him that people would actually make a jump from "muscle twitches" to "ALS" and freak out about it. As someone who actually knows what ALS looks like, he didn't quite seem to understand that.8. In your opinion, are EMGs even necessary to diagnose most cases of BFS? Or is that just done to calm people down? Can you diagnose someone just from the clinical?This answer was fairly straightforward. The clinical is what he really cares about. He said that when someone with ALS actually comes in his office, it is fairly obvious. He said they are generally drooling. They have no way to control their saliva anymore, and they are having problems moving around without help. He said there is no way a person with ALS could pass a clinical exam. He said that he generally won't even schedule an EMG unless there's something in the clinical that is suspicious. I asked why and he said because they hurt. He doesn't like poking needles into people if he knows there's no reason for it.9. Do you think there could be a link between IBS/Crohn's/Irritable Bowel and twitching?I asked this because my Crohn's symptoms have been flaring up like crazy lately. They started up almost the exact same day my twitching did. So I asked if they are related. He said that in my case, I was probably on the right track.10. How is what a layperson sees as "weakness" different than what a doctor sees as "weakness"?Now this was an important question, because I think it is the issue that newbies tend to flip out over at the start of their BFS experience. They start twitching, their muscles feel tired, and they immediately make the jump that fatigue equals "weakness." And this is where everyone flips out. So I asked my doctor to clarify this. I said, "To you, what is weakness?" He said, "When I sit someone down for a clinical, and I pull on their arm, I want to see if they can pull back. Can they pull back? If they can, then that's not weakness. So I'll say, hey I thought you said you had heavy legs. That doesn't feel heavy to me." I get the sense that he almost NEVER sees true weakness. So just keep that in mind the next time you start making the mental leap that you are truly clinically "weak." The fact that people just randomly show up with clinical weakness out of the blue with no warning symptoms seemed sort of laughable to him.Oh yeah... and finally, he said something at the end of my appointment that I though everyone would like to hear. In fact, it is something you will hear neuros say time after time after time in other peoples' doctor visit reports on this site. He said, "Facial twitching, nose twitching, calves twitching, legs buzzing, pins and needles, burning legs... I can't think of a disease in the world that could be responsible for all of that. I'm not concerned about your symptoms at all."So anyway there's my doctor's report. I'm not planning on going to a neurologist ever again, so I hope that was enough for you. Oh, and I'll let everyone know once he gets back to me on "BFS in a Nutshell." I'm curious what he will say about it.
P.S. No I'm not going to ask him any ALS symptom or bulbar symptom or any other scary symptom questions. Because in my opinion none of that is applicable to what most of us have. His answer will probably be, "Why? What do you care about ALS? You don't have it." Remembers, BFS and ALS are completely different entities. In my opinion, that would be like going up to my neuro and asking him how to change the oil in my car.
), but if for some reason he is mistaken, or even, our bodies, we never know, develop another condition, his colleagues will for sure know about and there goes his prestige.Also take into account that this doctor has probably seeing everything in his life, and read thousands of articles. There is always an exception in nature, there is always the headache that is brain tumor. The exceptions are studied and become references for uncertainity. Remember, exceptions are not 1:100.000, but 1:100.000.000 for example. Another thing I notice is the way european and american doctors face the problem differently. From what I see, a lot of times, european doctors (my example) just dismiss you saying everything is ok in the clinical and you don´t need to worry. There is not the same level of investigation that you get from a american doctor. Culture, private insurance, law suits, everything is different. I would rather have a lot of investigation to try to find the cause of the problem, than just be sent home told to relax.Anyway, if Krackersones is happy with the investigation, and mario is happy with his non-investigation, that is great. I just hope i get happy, soon