Posted: Tue Apr 05, 2005 8:51 pm
Post subject: A new poster but an "old-timer"
Hello everyone. First of all, I just want to let you all know that this site is really wonderful. It's a real source of comfort amidst all of the vague, generic healthcare websites. And the best part is, this site doesn't have to sugarcoat anything -- the information about BFS is valid and speaks for itself. Like many of you, I was terribly frightened when I realized that fascics could be a sign of something ominous (that shall remain unnamed). Maybe my case was a little different though, as I was sitting in a pathology class and a teacher brought up muscle twitching and said that widespread twitches were a bad sign. I instantly froze, having never realized that I had been flirting with disaster for about 8 YEARS! So what do I do? I go home and type "fasciculations" into Google. Bad idea (as we all know by now)! Within seconds, I was watching my life flash before me, thinking about how things would never be the same again. Contemplating how my fiancee would deal with the news. But little by litttle, things started to come to mind, things that just didn't fit in with the whole picture. OK, so I have been twitching for 8 years without any weakness or atrophy. Back twitches, calf twitches, bicep twitches, you name it. Folks, I am not trying to show off here or compare, but if you are looking for some people who put serious "twitch time" in, look no further. I was 20 when they began, and I am about to turn 28 in a few months. For some reason, I always accepted the twitches as normal until that ignorant teacher scared the crap out of me. So in some ways, I can relate to many of the new twitchers out there. Yeah, our condition sounds frighteningly close to something terrible, but that's just how the ball bounces sometimes. Here's hoping this post makes some of you skeptical twitchers feel better about your condition -- you're not being overly optimistic.
Now here is the funny part. Even longer than the twitching, I have had numbness in my left hand now for about 10 years. It is on the medial side of the palm and also on the dorsum (back). During that time, I was also getting intermittent shooting pains into my pinky. As a hapless college kid, instead of seeing a doctor, I would just shake out the numbness, which actually seemed to work most times. Well just a few weeks ago, after I had gotten over my BFS scare, my hand is completely and constantly numb and certain hand muscles are getting weak. And when I tap on my medial elbow, it sends electric shock into my hand. I'm sure some of you might freak out hearing about the weakness, but guess what? It is an ulnar neuropathy! In other words, I have some sort of mechanical compression of my ulnar nerve (the nerve that causes the funny bone sensation). I'm guessing the healthcare folks here could have figured all of this out. I have already been examined by an MD friend, so I'm not pulling all of this out of my rectum. The numbness is textbook ulnar nerve, covering the lateral half of the ring finger and the entire pinky finger on the palmar surface. The dorsum, innervated by the dorsal ulnar cutaneous nerve, is also numb, but since this branches before the wrist, I know that the problem is more likely at the elbow. Anyway, I have a neuro exam on Thursday and I'm going to get all checked out. The muscle weakness is a more severe (and late-stage) symptom of neuropathy, but I am going to see what treatment options I have. I am hoping to avoid surgery but we'll see. The interesting thing is that I have been able to oberve real fasciculations in my hand since they also occur in a long-standing neuropathy. Let me tell you, they are very fine and almost imperceptible, nothing like the big twitching we are all getting. I don't have any visible atrophy so I can probably get most of the function back upon treatment. Anyway, just thought some of you could appreciate this story, with the ironic twist at the end and all.
Finally, I will say that good has certainly come of this experience for me. It has reminded me of the fragility of life, the importance of relationships, and my own particular calling for greater spirituality and compassion. I hope each of you ultimately draws positive energy from your own BFS experience. We are all gonna die at some point, let's seize the moment!
P.S. I will give the results from my neuro exam when I get them, good or bad! I am extremely confident that things will turn out just fine.
Posted: Fri Apr 15, 2005 7:56 pm
Post subject: Follow-up (as promised)
Hey everybody, just wanted to update everyone on my particular situation. I got EMG and NCV testing done today by a great neurophysiologist. This guy trained for several years at Cleveland Clinic and previously worked at the Mayo Clinic. He did a very thorough job from what I can tell, sticking 8 muscles and moving the needle around several times for each one. During the exam, I could see the waves on the monitor and hear cracks and such. Naturally, I asked him how obvious different problems are and he said that experienced clinicians could discern different things pretty easily. In fact, he said that he didn't even have to see the screen but simply listen to the sounds generated by the computer. I was certainly hypervigilant of his expressions in case he encountered something ominous, but he seemed friendly and jovial during the entire exam. I figured that he wouldn't be able to give me a full rundown of the results -- I have to wait until next Tuesday to get the report directly from the neurologist -- but I prodded him a little bit on the way out and he told me all I needed to hear. "You definitely have a problem with your ulnar nerve, but you don't have something serious like motor neuron disease." I almost hugged the guy, but settled for patting him on the shoulder and thanking him. And with that, I'm going on with my life! I still think I can knock out the twitching someday, but if not, I can live with that.
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