Did anyone hear of BFS before you got it?

[SirTrouserz]

I think no one really knowing much about this condition- and that includes medical professionals- is one of the reasons that there is so much anxiety about this condition. Neurological symptoms are very frightening. They seem to indicate to us that something is very wrong with out brain/central nervous system which is seldom a good sign. Having a conditions that is based only on the exclusion of other much worse conditions makes the anxiety that much worse. What other condition would you expect someone to be in when they get to the doctors office? I think this, combined that no one has heard of it, makes it way to easy for the doctors to blame on anxiety. Why is there serious research going on elsewhere in the world about BFS/PNH and not here? Why isn't anyone talking about this? I've never read one word about BFS and neither has anyone I know.

There's a website to start support groups called meetup.com and I'm considering starting a support group in the Philadelphia, PA area if there are enough people here with this condition who are interested. I think that it's very easy to feel isolated with this condition and there's not enough information about it. If anyone else knows people in their area with BFS you should consider starting one, too. Maybe if we all get together and share information and support we can make some progress on making this more well known. That may save others some of the same fears and anxieties we all had when our symptoms began. Thanks for your input,
Sir_Trouserz