Hello everyone: I outlined my situation about end of Mar 05, I am now 10 full months into a bit of a dilemma. Yes, I was officially told I had BFS, BFCS or peripheral nerve hyperexcitabilty, whatever you want to call it. However I am not a bit better and 99.9% of my problems are from my right elbow to my fingertips. None of this bilateral, all over, get better, change location, etc stuff that everybody seems to have but me. That's why I am so concerned.
Persistent fine fasics right thumb, almost 24/7, probably suppressed by Klonopin temporarily. These date from day 1. I had right first dorsal interosseous fasics for a while, but these are now rare although this muscle will ache, especially with effort, as does the thumb. This was all I had at my first workup with Canada's largest ALS clinic, although they found fascics in these, and some right leg muscles,and a run of repetitive discharges in my right thumb.
Last few months, I noticed very fine twitches along the sides of the fingers of my right hand--several times a weeks, not extremely persistent, also twitching in my right hypothenar eminence (pinky pad at the wrist--usually one spot deep inside but often very persistent for days, will always come back after a while. In fact, there probably isn't a single hand and wrist muscle on the right that hasn't twitched in the last 6 months. Also, the biggish muscles of my forearm near the inner and outer side of the elbow have shown repeated twitches, often very fine, but the outer one once twitched with rapid thumpers that went on for about 18 hours straight a few weeks ago, haven't recurred and scared the s*** out of me while it was going on.
All the while, I have noticed very easy fatigueability of my right hand and and forearm, any sort of activity like swimming or even light weight lifting and my right hand/forearm would feel very tired and aching, sometimes for days. Things feel heavier when I hold them in my right hand. There is a background feeling of distress in the hand/forearm that is virtually constant, sort of a mixture of aching, tightness, about to crampishness(no actual cramp though), so I can say my right arm has not felt normal now since Oct 04, like even for a moment--there is always this weird feeling there. MY left hand and arm feel normal, except for 2 or 3 very brief episodes of fascics in the thumb/ forearm, last time a few weeks ago. None of that weakness/fatigue feeling.
I have those hand grip things, and can't detect any weakness with either whole hand or pairs of fingers, on either side. I'm the guy whose dominant right hand has a smaller thumb muscle but there is no weakness and no change in any muscle size over 10 months for what it's worth.
I had my local neuro check me out in June 05 because I was going crazy with worry--she's not an ALS specialist, but found nothing clinically or on EMG. Put me on more Klonopin which helps somewhat. I'm just not getting even a teensy bit better though, and with virtually everything going on from the right elbow down, I insisted on a followup at the ALS clinic which will be early Oct 05, almost one year exactly since this all started and began destroying my sanity. Oh yeah, one thing neuros my do to test your intrinsic hand muscles is put a slip of paper between two fingers and ask you to hold it while they pull it out--there's not much strength to start with, but I guess I did OK.
I suspect the ALS guys will find nothing on clinical exam (although I could be wrong), and the EMG will be not perfectly normal, but probably will not show denervation changes, so I may end up being told the same thing I was in Jan 05, ie BFCS,PNH. However, my worst fears could be realized--why can't this be early limb onset ALS--being a doctor and a hypochondricac means I don't usually wait too long and I usually go the top, making me an atypical patient who might be showing up a bit too early for a diagnosis to be made. It is terrible constantly worrying about this. If it was both sides, or one arm and one leg or something, I would feel a lot more reassurred. The persistent one limb symptom is what really gets me even if the cardinal symptoms of clinical weakness and atrophy are not there (I'm waiting for those of course, making myself crazy doing it).
The other thing is: can repetitive stress injury have anything to do with this: you read that there are so many different expressions of this concept and I have been a heavy computer user, esp mouse for years, as part of the job. I just can't get it to fit well with the way it started and gone on these last few months.
I would appreciate any comments/observations and I guess I feel it is my duty to tell you what the followup visits show.
Persistent fine fasics right thumb, almost 24/7, probably suppressed by Klonopin temporarily. These date from day 1. I had right first dorsal interosseous fasics for a while, but these are now rare although this muscle will ache, especially with effort, as does the thumb. This was all I had at my first workup with Canada's largest ALS clinic, although they found fascics in these, and some right leg muscles,and a run of repetitive discharges in my right thumb.
Last few months, I noticed very fine twitches along the sides of the fingers of my right hand--several times a weeks, not extremely persistent, also twitching in my right hypothenar eminence (pinky pad at the wrist--usually one spot deep inside but often very persistent for days, will always come back after a while. In fact, there probably isn't a single hand and wrist muscle on the right that hasn't twitched in the last 6 months. Also, the biggish muscles of my forearm near the inner and outer side of the elbow have shown repeated twitches, often very fine, but the outer one once twitched with rapid thumpers that went on for about 18 hours straight a few weeks ago, haven't recurred and scared the s*** out of me while it was going on.
All the while, I have noticed very easy fatigueability of my right hand and and forearm, any sort of activity like swimming or even light weight lifting and my right hand/forearm would feel very tired and aching, sometimes for days. Things feel heavier when I hold them in my right hand. There is a background feeling of distress in the hand/forearm that is virtually constant, sort of a mixture of aching, tightness, about to crampishness(no actual cramp though), so I can say my right arm has not felt normal now since Oct 04, like even for a moment--there is always this weird feeling there. MY left hand and arm feel normal, except for 2 or 3 very brief episodes of fascics in the thumb/ forearm, last time a few weeks ago. None of that weakness/fatigue feeling.
I have those hand grip things, and can't detect any weakness with either whole hand or pairs of fingers, on either side. I'm the guy whose dominant right hand has a smaller thumb muscle but there is no weakness and no change in any muscle size over 10 months for what it's worth.
I had my local neuro check me out in June 05 because I was going crazy with worry--she's not an ALS specialist, but found nothing clinically or on EMG. Put me on more Klonopin which helps somewhat. I'm just not getting even a teensy bit better though, and with virtually everything going on from the right elbow down, I insisted on a followup at the ALS clinic which will be early Oct 05, almost one year exactly since this all started and began destroying my sanity. Oh yeah, one thing neuros my do to test your intrinsic hand muscles is put a slip of paper between two fingers and ask you to hold it while they pull it out--there's not much strength to start with, but I guess I did OK.
I suspect the ALS guys will find nothing on clinical exam (although I could be wrong), and the EMG will be not perfectly normal, but probably will not show denervation changes, so I may end up being told the same thing I was in Jan 05, ie BFCS,PNH. However, my worst fears could be realized--why can't this be early limb onset ALS--being a doctor and a hypochondricac means I don't usually wait too long and I usually go the top, making me an atypical patient who might be showing up a bit too early for a diagnosis to be made. It is terrible constantly worrying about this. If it was both sides, or one arm and one leg or something, I would feel a lot more reassurred. The persistent one limb symptom is what really gets me even if the cardinal symptoms of clinical weakness and atrophy are not there (I'm waiting for those of course, making myself crazy doing it).
The other thing is: can repetitive stress injury have anything to do with this: you read that there are so many different expressions of this concept and I have been a heavy computer user, esp mouse for years, as part of the job. I just can't get it to fit well with the way it started and gone on these last few months.
I would appreciate any comments/observations and I guess I feel it is my duty to tell you what the followup visits show.
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