Hope for Self-Diagnosed BFSers

[LetsGoBucs]

I saw my GP twice, had blood work and reflexes all checked out, all was fine, I was told I was fine and I have some twitching and maybe I needed to manage stress. Never saw a neuro, never had an emg. I went on with my life and 2 years later I am no worse actually much better, 98% twitch free, working on managing my stress levels and am a self diagnosed BFSer. There is hope, the best thng to do is learn hoe to stop obsessing over the twitches. I know easier said than done, but it does work!

 

[Alonzo]

I saw my GP the 5th day of twitching, after I read that twitches are a sign of ALS, and he said he didn't think I had anything wrong with me, and that he had 2 or 3 other patients that twitched all over for no apparent reason. He said they were pretty much normal and healthy, but for some reason they twitched. That's because he didn't know about "BFS", which later-on I made sure he knew about.

To date, I have had no EMG and have not seen a neuro. I'm a big, bad guy, but I'm also a big weenie when it comes to this kind of stuff, so I chickened-out of seeing the neuro

 

[Mynameisarron]

I've been twitching for six months, but I'm scared to take an EMG.
The doctor hasn't suggested one either. I've got a follow up in the next week, but I'm unsure if I even want one!
Twitching like crazy, and my stress level is off the charts , but I think it would be worse if it showed "something" not right than nothing at all...

 

[Droid4Free]

I, too, was...it sounded so horrible and I HATE needles...it was a piece of cake, and I am so glad I got that off my consicence because I firmly believe an in office exam - by someone very experienced in neuromuscular - is a very good indicator of a healthy person vs. something pathological, BUT an EMG just seals the deal. Everything I have seen has said at a minimum the EMG has been at least "inconclusive" in ALS patients - never just clear, clean and totally normal. So when you get a normal you are good to go! Might ease your fears if you are having lingering ones and it really is a big fat nothing in terms of pain.

 

[furballfury]

AlonzoToo-

That is a BAD idea. If there is one universal truth in the whole arena of anxiety, it is that the method of feeling better by never having to face a bad diagnosis only EXACERBATES your anxiety, and will ultimately overcome you. You cannot erase the doubt this way, and any future twinge or percevied abnormality is going to ressurect fears and anxiousness. Your fear of the unknown has already placed you directly in the flight or fight syndrome of anxiety (deep down, you are fleeing the "bad" test results and are using that to suppress anxiety)...this wears on you, and I suspect you are not similarly equipped to control this long term as someone like Alonzo is, who is not at all worried that a negative result could develop - just doesn't need the test to confirm what he already knows.

I don't want to pour cold water on things, but to truly overcome this cycle you are in, you have to focus on doing what it takes to get yourself in a place where you are convinced that all is normal and that there is NOTHING to be worried about, including negative test results. I hope you find the courage to confront the infintesimally small liklihood that you might get a negative result, and give yourself the peace of mind that comes from not having the unknown to worry about.

JG