Finding Support on BFS Diagnosis

[FairyQueen1998]

I'm sooo happy I found this site!!! All of you really save me from falling apart completely. Just knowing that others go through the same scares makes me feel just a bit better. I was diagnosed with BFS from a neuro 1 week ago with just an examination no EMG. But in Feb of 05 I had this weird feeling in my right arm and the neuro sent me for an MRI (thinking MS) all was well with my brain and then the twitching started.
I think my Internist thinks I'm nuts! When I told him about the neuro's diagnosis he asks "Can you see the twitches?" I've never actually seen my twitches because by the time I look at where I'm twitching, the twitch has moved and I'd make myself dizzy just trying to find where the twitch is-because the twitches are everywhere and not in any one particular spot. The GP responds that my description of twitching isn't very descriptive and there's nothing he can do for me and then laughs as he's writing benign facs. syndrome. He doesn't order any labs just sends me on my merry way feeling that maybe I am nuts! Have all of you seen your twitches? I'm getting dizzy trying to look!

 

[Selena647]

Sometimes I see them, sometimes I don't. The quick ones are too hard to "catch" like you said. However, I have had hots spots where the twitching last for hours or days that I can definitely see.

Barb

 

[Rimmer]

Ditto what Barb and Ginny have said. I can stare at my leg/calf and periodically "catch" them. Often I'm looking at one place and feel them in another. However, it's ALWAYS easier to see them (especially the fine ones in the feet) after I've come in from a run. The frequent twitching (calves/feet) goes on for hours after exercise. (Some positions I've found makes it easier to see them, too [I think]). Like Ginny has said before, some I feel, but cannot see; some I see, but can't feel; and, some I can see and feel. (Most of the time I can feel them, however.)

--ginny