Promote BFS Awareness

[SirTrouserz]

Hi Chipper,
I think that's a great idea, but I also think part of thr problem is that no one has heard of BFS either in the general public or in the media. I really think it's important that we get some press for BFS since it's the most common cause of twitching according to my neurologist. The doctor I worked for I got it had never heard of it. I think, though I could be wrong, that if BFS/PNH were more well known that when people had their first symptoms they would at least have the knowledge that there are benign neurological conditions. Being in the health care field yourself, had you ever heard of it? Have the doctors you've seen heard of it? The CDC recognizes other syndromes, but not ours. I think that should change. Thanks for your input,
Sir_Trouserz

 

[inzTwoToneTunes]

No one has really heard of BFS, however they do know about benign fac's. I do not know who coined the term bfs. In my opinion there is a lot more going on then benign twitching. I think PNH suits this condition much better. Doctors for the most part dismiss syndromes.

DD

 

[inzTwoToneTunes]

Sorry- Welcome M3. You are classic BFS. If you are twitching an emg would pick up something sinister by now. All Neuro's say see you in 3-6 months.

DD

 

[AndyStreams]

Hey Kristin--

It's weird how our neuros can tell us one reassuring thing after another (clean emg! would bet medical license on you not having als!!) but all they have to say is one mildly ambiguous but still not really bad/ominous thing like "lets see you in a few months to make sure," and our minds flip out.

The doctors wording may have been poor, but all he is doing is standard follow up care. It's good for his business as a doctor and for your mental stability. The person that gave me my EMG said she likes to schedule follow up EMGs on BFS patients just to "reassure them that they are not developing anything worse." That is a gentler way of saying exactly what your neuro said: "you're fine. We'll follow up later and I can tell you your fine again."

 

[LennyD]

I have noticed something that maybe you all can confirm. It seems like the BFS thing is almost always a calf thing. The best help I can offer is to go get the emg done. It doesn't really hurt and it will provide you a huge sense of relief.

ed

 

[boysGrandmaof3boys]

Thanks to all of you that have replied...I really appreciated the thoughts and support. I can't say enough what a huge God send this forum has been for me. When I first started twitching several months ago I felt so alone! Just knowing there are many others like me, who can relate to the annoyance of the twitches and the fear that accompanies them, is a huge relief!! Right now I am just so grateful for a clean EMG, a completely normal neuro exam, and the fact that for the most part, my twitches are less severe than when this all started. Yes, I still have bad days (yesterday wasn't the best) but knowing that there are people to talk to that know what I'm going through and can relate to my fears makes it all so much easier to handle. Thank you again!! )