Back with BFS after 8 years

[falcon971]

Hi everyone. I've not been on here in quite a long time, but could do with some advice or just to hear others experiences.I've had BFS for 8 years at the end of March and although I'm generally at ease with things now, I'm currently going through a rough time with it having been ill last week. From about a week before I got a touch of the flu, my symptoms have become much worse. More of the big fasciculations, shakes, aches and weakness.I'd like to see a doctor about this as, although I am at ease with it, I still think I should see one when things hit a new low. Maybe I shouldn't, I don't really know?Anyway, my problem is that I moved house a couple if years ago and my new doctor knows nothing about the condition. I've never been in their office for more than 2 minutes and last time I as a phase similar to this, they diagnosed me with ME despite me telling them it was the BFS. Miraculously, I made a full recovery from this "ME".My question here is how do you find a doctor who understands BFS, and what are your experiences with doctors knowledge of it?

 

[Shawn87]

You probably won't find too many unless they are a neurologist. I don't remember it ever being discussed in medical school. Finding a family doc that knows about it would be tough unless that doc has it himself or had some terrific neuro rotations. How I was trained to look at fasiculations were that whole body fasiculations are rarely significant. Check thyroid, lyme and some general blood work. If the neuro exam and labs are ok...no need to refer. I was never given a name like BFS...didn't hear that name until I got it. My partner is a neurologist training as a fellow under me in addiction medicine. He stated he never chases fasiculations with a normal neuro exam. He did a neuro exam on me and told me to chill out. I didn't believe him, and the second neurologist said the same thing but did an EMG to humor me.

 

[edadoStar]

With 8 years behind you, I bet you know more than most doctors and Neuro!

 

[falcon971]

Thanks for the responses peeps. Yeah, I definitely do know a lot more than the GP's at my current doctors surgery, for whom I get the impression don't acknowledge it as a real thing (I say thing as I don't really know how to classify it; illness and disability, as I've read some people consider it, don't feel right to me).I suppose where it's relatively uncommon, it wouldn't get a whole lot of a mention academically to GP's. I don't know how uncommon though, I've often wondered if there's any guestimations on how common it is. I don't think I've ever known anyone else that I've met to have it. I don't go around advertising it to be honest though. Only close friends, relatives and close work colleagues know (not even my current bosses know as I try to hide it from them, which can be difficult at times). Plus the fact that not a lot that is generally known about it, what causes it, what helps it etc... would be another reason. You can't teach what isn't known. I was lucky with my old doctor as one of his doctor mates had it so he understood to an extent.I can't remember what the Neuro's knowledge was like. I think he seemed to understand it better than anyone else I'd come across though. Only seen him a couple of times and that's probably 6 or 7 years ago now.Maybe I need to change my surgery and when looking for a new one, ask if the doctors know anything about the condition?Looking at the forum, that I haven't been on in ages as I've come to terms with it all quite some time back, there is clearly still a lot of worry with noobs, and even people who have had it for a while. When it gets to the 8 years of having it in a couple of weeks, I will post a new thread detailing my experiences in the hope that it helps to alleviate some peoples fears/answer some questions they may have. I see a couple of people seem to do this annually and I think that's a god idea to help others out.