I started twitching in Oct. '98 and since then have had episoded of tongue and chewing fatigue that come and go. I'm also hypothyroid and had CFS which confuse things up a bit.
First of those neuros, in Indiana: gave me the EMG within a few months of start of twitching (using a fancy new laptop, not the old yellow machines the other neuros used that look like they're out of a Star Trek episode) and said it was normal. Only did my leg I think. I believe I asked him if it was sufficient only there, and he said yes, that even if ALS were manifesting itself elsewhere he would see "suspicous" things that would cause him to start poking around elsewhere. Under questioning, he said even in its earliest stages an EMG will catch ALS 99% of the time, if not more, but he aknowledged it can miss on rare occasion. At about two and a half years, I saw him again and he said it's "still benign". When I asked him if I'm at a normal population risk for ALS yet he held his fingers about half an inch apart and said "you're this close, almost over the edge." He also added that if it did turn out to be ALS it would be slow, and amount to "a floppy hand or something" (before you set into him on that issue--the father of a friend of mine has had ALS for 21 years and up until last year only his hands were affected--and he's part of a long term study so it's well verified as ALS).
I recently emailed him again saying I'll be in Indiana in July for a visit, that I was still having episodes of tongue and chewing fatigue (never slurring or anything debilitating... occasional swallowing issues but it was always with anxiety periods I think) and asked if at almost five years if I'm out of the woods yet. He was rather noncommittal and said this long without atrophy or weakness strongly supports a benign dx, but that it would be "worthwhile" to come in again to see him. So I'll see him again in July.
The California neuro I saw while living there was a bit different, a Canadian, who also taught EMG at a nearby university med school (both are very respectabel med schools). He was certified in EMG as well as psychiatry and gave me several EMGs over the two years I saw him, though they were obviously for my anxiety and only amounted to like five or six jabs each. He said it's "highly" or extremely" unlikely that my BFS would turn into, or out to be, ALS. I asked him when I could consider myself out of the woods, and he said "let's go for two years." After the two year mark, I reminded him of what he'd said and he goes "great, now let's go for ten!" Under questioning, he said at my stage it's "highly unlikely" that I'll develop ALS, but that on rare occasions, some people "develop problems." It was clear what he meant, as the only topic had been ALS. I didn't nail down the semantics, but he seemed to be suggesting, on RARE occasions, a connection between twitching and getting ALS as much as ten years later.
During the time I was seeing him, I went to get a second opinion from a neuro about MS (I'd had a spot on an MRI) as I was preparing to drop my medical insurance to move to Italy. This lady I think was fairly inexperienced, and at the end of the examination said my tongue was atrophied and that I need a tongue EMG and she suggested it was ALS in a few different ways. I argued that it's natural scalloping of the tongue from my teeth, and I'd had it at least two years. "only two years?" she said--and I said no, that's when I started obsessivley looking at my tongue. We were standing right beside an EMG machine and she wouldn't stick me to settle the matter there, referring me back to my main neuro because he was more qualified. He couldn't see me for a week. My main neuro in CA took one look at my tongue and said it's normal and I didn't even need any more tests, and suggested we photograph my tongue and send it to her with a note explaining what a scalloped tongue looks like. A couple months later I was back in Indiana for the second visit with the Indiana neuro and mentioned my tongue episode. He looked at my tongue and immediately said nothings wrong, and that he knows just by listening to me that I don't have bulbar-onset. That episode was February of '01, and nothing has progressed since then.
(interestingly, neither of these teaching neuros will do tongue EMGs, saying they really give little useful information)
So, after almost five years of twitching, several clean EMG's and clinical exams (one earlier EMG picked up rare polyphasic units that the neuro wrote fell within normal limits and were not mentioned again on later EMGs), I'm apparently not totally out of the woods or back to the same risk as normal populations. I'm not sure why, considering what I've read over the years at Braintalk.
SO, in summary, yes my neuros differ somewhat from what is considered conventional wisdom but not substantiall enough for anyone to worry over. I think the CA neuro might be one of the "old school" types, though I have no real way of judging.
Thoughts are welcome. I might update this as I remember stuff.
First of those neuros, in Indiana: gave me the EMG within a few months of start of twitching (using a fancy new laptop, not the old yellow machines the other neuros used that look like they're out of a Star Trek episode) and said it was normal. Only did my leg I think. I believe I asked him if it was sufficient only there, and he said yes, that even if ALS were manifesting itself elsewhere he would see "suspicous" things that would cause him to start poking around elsewhere. Under questioning, he said even in its earliest stages an EMG will catch ALS 99% of the time, if not more, but he aknowledged it can miss on rare occasion. At about two and a half years, I saw him again and he said it's "still benign". When I asked him if I'm at a normal population risk for ALS yet he held his fingers about half an inch apart and said "you're this close, almost over the edge." He also added that if it did turn out to be ALS it would be slow, and amount to "a floppy hand or something" (before you set into him on that issue--the father of a friend of mine has had ALS for 21 years and up until last year only his hands were affected--and he's part of a long term study so it's well verified as ALS).
I recently emailed him again saying I'll be in Indiana in July for a visit, that I was still having episodes of tongue and chewing fatigue (never slurring or anything debilitating... occasional swallowing issues but it was always with anxiety periods I think) and asked if at almost five years if I'm out of the woods yet. He was rather noncommittal and said this long without atrophy or weakness strongly supports a benign dx, but that it would be "worthwhile" to come in again to see him. So I'll see him again in July.
The California neuro I saw while living there was a bit different, a Canadian, who also taught EMG at a nearby university med school (both are very respectabel med schools). He was certified in EMG as well as psychiatry and gave me several EMGs over the two years I saw him, though they were obviously for my anxiety and only amounted to like five or six jabs each. He said it's "highly" or extremely" unlikely that my BFS would turn into, or out to be, ALS. I asked him when I could consider myself out of the woods, and he said "let's go for two years." After the two year mark, I reminded him of what he'd said and he goes "great, now let's go for ten!" Under questioning, he said at my stage it's "highly unlikely" that I'll develop ALS, but that on rare occasions, some people "develop problems." It was clear what he meant, as the only topic had been ALS. I didn't nail down the semantics, but he seemed to be suggesting, on RARE occasions, a connection between twitching and getting ALS as much as ten years later.
During the time I was seeing him, I went to get a second opinion from a neuro about MS (I'd had a spot on an MRI) as I was preparing to drop my medical insurance to move to Italy. This lady I think was fairly inexperienced, and at the end of the examination said my tongue was atrophied and that I need a tongue EMG and she suggested it was ALS in a few different ways. I argued that it's natural scalloping of the tongue from my teeth, and I'd had it at least two years. "only two years?" she said--and I said no, that's when I started obsessivley looking at my tongue. We were standing right beside an EMG machine and she wouldn't stick me to settle the matter there, referring me back to my main neuro because he was more qualified. He couldn't see me for a week. My main neuro in CA took one look at my tongue and said it's normal and I didn't even need any more tests, and suggested we photograph my tongue and send it to her with a note explaining what a scalloped tongue looks like. A couple months later I was back in Indiana for the second visit with the Indiana neuro and mentioned my tongue episode. He looked at my tongue and immediately said nothings wrong, and that he knows just by listening to me that I don't have bulbar-onset. That episode was February of '01, and nothing has progressed since then.
(interestingly, neither of these teaching neuros will do tongue EMGs, saying they really give little useful information)
So, after almost five years of twitching, several clean EMG's and clinical exams (one earlier EMG picked up rare polyphasic units that the neuro wrote fell within normal limits and were not mentioned again on later EMGs), I'm apparently not totally out of the woods or back to the same risk as normal populations. I'm not sure why, considering what I've read over the years at Braintalk.
SO, in summary, yes my neuros differ somewhat from what is considered conventional wisdom but not substantiall enough for anyone to worry over. I think the CA neuro might be one of the "old school" types, though I have no real way of judging.
Thoughts are welcome. I might update this as I remember stuff.
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