Aw man, Trfogey. You are a voice of rationality around here, and it sucks to think of what you're going through. Even when I think I can empathize, I can't even come close. Thank you for the reassurance; you have my word that I won't go seeking any more unless something drastically changes. My primary reason for being on the "Do I Have ALS" boards is to help people who are worried about ALS, but really shouldn't be-- like I once was. And to help the PALS by handling some of the "I twitch...is this ALS?" workload!
Also, I like to speak with other people who also have some neurological/neruomuscular problems but are undiagnosed. Many of us have something wrong that shares some symptoms with early ALS, even though it's not actually that disease. Which leads me to...
Kelly--
My EMG reported said:
"Nerve conduction studies in the upper extremities and right leg are normal, with one possible exception: left ulnar ADM CMAP revealed conduction velocity across the elbow that was more than 10 m/s slower than the forearm segment. Left ulnar ADM inching across the elbow, however, did not reveal any segments with significant slowing (latency difference of >0.8 msec.) Concentric needle EMG of the right arm was normal.
Normal study with a single borderline result of uncertain significance. Clinical correlation is advised. There is no electrophysiologic evidence of brachial plexopathy on either side, or of a disorder affecting cervical roots or motor neurons on the right."
I also had an earlier EMG that noted a lot of fasiculations, but nothing else. This latest report was confusing, because my doctor initially told me this was part of the "needle" exam, not the nerve conduction, but later a neuro told me this was nerve conduction, not needle. With the help of the folks on this board, I believe the latter.
I try not to be haunted by the last sentence in the EMG report, but it does bother me. It says I don't have any signs of plexopathy on either side, and no signs of Motor Neuron/cervical root problems on the right...does that mean I do show signs of Motor Neuron/cervical root stuff on the left?
At first I thought I was just a BFSer, and had come to peace with that, but then other symptoms showed up. The atrophy in my thenar muscle on my hand is the most obvious, but I also have some "suspected" atrophy on the pad of my left foot and on the side of it as well. I get tons of weakness with exertion; sometimes after exercise I can't walk correctly or lift certain fingers...but all the strength eventually returns. The muscles burn like crazy, but then they get better. My foot scrapes a lot, but I'm not tripping. My muscles can shake like crazy, but some days are worse than others. I still twitch (almost) everywhere--- face, tongue, hand, back, butt, blah blah. These are all signs that something is wrong, but it's just not consistent with what I understand about ALS.
I had cancer when I was 12, so sometimes I think this may just be long term effects of radiation to my spine. But really, I have no idea and neither do my docs. I'm concerned that it's getting worse, but the progression is really slow. I'm pretty darn convinced that it's not ALS, it's just disconcerting knowing something is going on, but not being able to identify or treat it.
Ha, maybe this would have been a better PM...but I also think open conversations about stuff like this are good for other undiagnosed folks to see. I've been following your story on these boards, and you really have been going through quite a bit. How you holding up now? I actually think that "don't care" attitude can help; it's a sign that your skin is getting tougher, which is necessary to go through some of this medical crap. But ultimately you should care, and I'm sure deep down you really do. Hopefully the docs can give you some concrete answers, and corresponding treatment, asap.
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