I'm new here, but have been in and out of the MGH/Cleveland Clinic forums since 2/99, when I began with profuse, body-wide fasciculations. Some of the most desperate posts you've ever read, and I'm sure most have you have scoured the far reaches of the Web to find them, are mine. Taken together, as I have collected my posts and emails to doctors and fellows alike, the corpus of blithering looks like the work of a madman.
That said, I had my fourth, right, as in 4, EMG at Yale's MDA clinic by the same leading neuromuscular specialist I have been torturing and pestering for the whole 5+ years. Guess what? I'm still fine.
I have read the survey here of everyone's symptomology, and to be honest, I would put myself at the worst end of the spectrum. In fact, one time several years ago, my doc brought residents in to see precisely what big-league fasciculations look like.
When I had the EMG the other day, just before the doctor came in to do it, I was sitting with two neuro residents talking about my history, electromyography, and all that jazz. Upon my finally taking a breath, one of the kids asked me if I were a doctor! I am not.
My point is this: all of what you want to believe about BFS -- the stuff we continually pound into each other's heads, is absolutely true. The medical literature does not lie, and neither do your doctors. Insidious MND's present to doctors the way a skunk presents at a picnic. It's really quite that simple.
My neurologist, by virtue of running the clinic for years, has seen hundreds of BFS cases, and as much ALS as anyone, as he will say. He reports, that he knows immediately upon examination when there is a worrisome pathology. He has never been wrong.
So, my parting point is this: my most recent exacerbation was awful; quite literally could not be worse on any count of the whole gamut of symptoms. I panicked; went throught the whole obsessive routine many of us go through -- made my life and those around me absolutely miserable. And to what end? To find that I still have the same old, pain-in-the-ass, BENIGN problem that nobody understands.
Take the test once, and be done with it. Buy your peace of mind, but let it really bring you peace. This annoying syndrome has cost me a wife, a career, my sanity, and so much more. Please listen to me.
Be well,
Sean
That said, I had my fourth, right, as in 4, EMG at Yale's MDA clinic by the same leading neuromuscular specialist I have been torturing and pestering for the whole 5+ years. Guess what? I'm still fine.
I have read the survey here of everyone's symptomology, and to be honest, I would put myself at the worst end of the spectrum. In fact, one time several years ago, my doc brought residents in to see precisely what big-league fasciculations look like.
When I had the EMG the other day, just before the doctor came in to do it, I was sitting with two neuro residents talking about my history, electromyography, and all that jazz. Upon my finally taking a breath, one of the kids asked me if I were a doctor! I am not.
My point is this: all of what you want to believe about BFS -- the stuff we continually pound into each other's heads, is absolutely true. The medical literature does not lie, and neither do your doctors. Insidious MND's present to doctors the way a skunk presents at a picnic. It's really quite that simple.
My neurologist, by virtue of running the clinic for years, has seen hundreds of BFS cases, and as much ALS as anyone, as he will say. He reports, that he knows immediately upon examination when there is a worrisome pathology. He has never been wrong.
So, my parting point is this: my most recent exacerbation was awful; quite literally could not be worse on any count of the whole gamut of symptoms. I panicked; went throught the whole obsessive routine many of us go through -- made my life and those around me absolutely miserable. And to what end? To find that I still have the same old, pain-in-the-ass, BENIGN problem that nobody understands.
Take the test once, and be done with it. Buy your peace of mind, but let it really bring you peace. This annoying syndrome has cost me a wife, a career, my sanity, and so much more. Please listen to me.
Be well,
Sean
