Self Diagnosis?

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Self Diagnosis?

Postby EricB on February 26th, 2004, 6:09 pm

Reading your stories have been very comforting... thanks for running the sight.

I first noticed my twitching in both calves about two months ago. It was later accompanies by strange sensations, some discomfort, but no real pain or weakness. After a month of trying to ignore it, my wife finally called my doctor because se was tired of listening to me complain. When he saw my cpk was 370, he referred me to a neurologist.

I was examined by the neurologist last week, with an EMG, and he said no ALS, and that the fasciculations were benign. He didn't way bfs, but I stumbled onto your sight when I did a google on "benign fasciculations."

I was feeling better, but I was a bit worried when my regular doctor told me he was surprised to hear that the EMG was clear. He explained that twitching is caused by denervation, and that he rarely saw cases like mine that had none. He usually has a great bedside manner, but this unnerved me. Is it common for doctors not to really know about BFS?

He's rechecking my blood work now, and still looking for answers.

My only other question is if my EMG is clear, do I ever need to repeat it if the symptons don't change? Also, is there a way to self test for weakness, or other "bad" symptoms?

In my anxiety, I think I also have become more aware of everything my body does, including every little stumble, loss of balance, etc. I once heard trippting on rugs was a symptom of ALS. Now I'm all nervous because I do kinda stmble a few times a day, but I probably always have, and just haven't been aware of it. Any thoughts?

Also, does anyone use any medications to stop the twitching? Any success?

Thanks so much for reading!
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Postby garym on February 26th, 2004, 8:24 pm


I wouldn't pay any attention to what your regular dr. says about fasciculations. They are infamous for not knowing about benign fasciculations. Most of them automatically relate fascics to something serious, and most have never heard of BFS.

Listen to your neurologist, and trust the test results. Trust me, you will save yourself a lot of misery. If the neuro says no ALS, give thanks and believe him. Also, the stumbling and other stuff is probably a symptom of anxiety. I've been there.

Good Luck,
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Postby jcavan4125 on February 26th, 2004, 10:24 pm

Gary's right, a normal EMG means no ALS! Most Primary Care Docs have never heard of BFS (even some neuro's, believe it or not). Oh they have heard of benign fasciculations but not BFS per se.
As far as the "tripping on the rug thing", I suspect it is nothing more than the power of suggestion. It's kind of like if I told you not to think about groundhogs, you might find it hard not to think about them. Now if I told you that if you think about groundhogs it means you have a horrible fatal disease,... you are really going to have a hard time not thinking about them!
Try to relax!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby speg on June 18th, 2004, 6:00 pm

This bothers me that a GP doctor could be so . . . misinformed. Anyone who has had enough education to read, can look up muscle twitching in the encyclopedia of medical terms and see about a dozen causes of muscle twitching other than ALS.

Anyone who can use a computer can look on the Internet and find hundreds of people posting about muscle twitching with no ALS. And dozens of stories of GP doctors who wouldn't even give a referral to a neuro, and neuros who wouldn't give a EMG cause it wasn't needed. Give me a break!

I am not so sure I would return to this GP is he is that stupid.
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Postby terryg on June 19th, 2004, 8:33 am


I feel as the others that you are in the clear. I believe many if not most very experienced GP's may not have hard of bfs. Medicine is a very wide field. There is an old saying told to Medical students that they will only learn 50% of what they need to by the time they graduate and 50% of what they learned will be obsolete. My impression is that I feel good about your GP taking a interest in your case enough to double check things. Many errors slip through the cracks because a GP does not have time to question all the reports he has seen.

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