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rhythman

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Hi All

I hope this post finds you well.

I have been completely offline for awhile as I promised I would until I had more tests and met with the neuro again.

In the past 2 weeks, I've had more blood work, 2 mri's, and yesterday, the ncv and emg of the limbs. The neuro also did an exam to test relexes, Babinski, Hoffman's, had me walk, do lots of those coordination tests, etc. We sat down with all the test results after so he could give me his thoughts.

Everything was normal except fasics in calves and "significant fasiculations" in tongue. He said that these results allowed him to rule out many things, but but not als yet. He said the tongue fasiculations and some of the other things I've described to him (nasal voice, crazy choking episodes, etc.) mean bulbar als is still possible. At that point, I had a few questions, but an ambulance came in and he was called out of the clinic. I was told he wouldn't be back for awhile and to just go home. His office is to call next week sometime.

I know that there are very knowledgeable people on here, so I'd like your thoughts on the following.

I have been having problems with all my limbs since October. I have gone from working full time before Christmas, to half time, to being off completely now. I am having a really hard time writing and walking is becoming awkward (neuro said yesterday my gait was "not normal"). As I noted in a January post, I can not lift as much weight, everything is apparently 'heavier' and my arms fatigue quickly even holding a phone. I'm not imagining this...I can no longer run, walking feels strange, a laundry basket of clothes is heavy, etc.

Here's my question: If this weakness, which has been getting worse for 3-4 months, was caused by als, wouldn't this have been picked up with the emg? He said it was nearly 100% clean except for calf fasics. Isn't the emg sensitive enough that it often detects weakness before the person notices? I've noticed weakness for months, but the emg didn't. What's up with that?

Thanks guys.
 
Everything was normal except fasics in calves and "significant fasiculations" in tongue. He said that these results allowed him to rule out many things, but but not als yet. He said the tongue fasiculations and some of the other things I've described to him (nasal voice, crazy choking episodes, etc.) mean bulbar als is still possible. At that point, I had a few questions, but an ambulance came in and he was called out of the clinic. I was told he wouldn't be back for awhile and to just go home. His office is to call next week sometime.

Personally, I would want to know why he thinks that bulbar ALS is still in play when he has said that the EMGs are normal. Is he planning to do an EMG of the mouth and throat muscles to confirm his suspicions?

Here's my question: If this weakness, which has been getting worse for 3-4 months, was caused by als, wouldn't this have been picked up with the emg? He said it was nearly 100% clean except for calf fasics. Isn't the emg sensitive enough that it often detects weakness before the person notices? I've noticed weakness for months, but the emg didn't. What's up with that?

EMGs don't measure strength of the muscles. EMGs measure electrical currents in the muscles and detect abnormal currents. The doctor measured muscle strength, quite literally, hands on. And, if you have been getting weaker on both sides of your body (and all four limbs) at the same rate over the past few months, it is actually an indicator against ALS.

I don't know how things are done in Canada, but I think that you need to see a neurologist who specializes in neuromuscular disorders. Your current doctor seems more likely to muddy the waters than to clarify them. I wonder if he 's ever seen a case of bulbar ALS before.
 
If you have clean EM's that points away from ALS.

trfogey, things are done the same in Canada as in the US as far as diagnosing ALS.

Please make an appointment to see a neurologist. Remember, there are good and bad doctors no matter where you live in the world.
 
Thanks for your replies.

I asked the neuro why he's considering bulbar als and he said that "true tongue fasiculations are rarely benign". The guy is, according to my general practitioner, a well respected neuro, about 50 years old. He said he has seen several cases of als in his career, but only a few with bulbar onset.

I have asked for a referral to a neuromuscular disease specialist at a teaching hospital a few hours from my home, but I expect that might take a few months to get to see him. In the meantime, the neuro-who seems to be a very compassionate man-said that if things get worse, he'll repeat the emg in a few months. No mention of tongue emg...the fasiculations are very visible so perhaps he sees no need.
 
Hello Rhythm

I'm not sure where on earth that neuro got his information, but tongue fasics are no different than fasics in any other muscle. He is probably quoting information from out-dated, general neuro texts that were left-over from medical school.

Futhermore, if your limb-weakness was due to lower motor neuron problems (as is seen with ALS), the EMG would be dirty . . . end of story. You can have weakness from upper motor problems (the EMG does not detect upper motor neuron problems) but that would come more from spasticity . . . BUT . . . you would assuredly have brisk reflexes, and a slew of other upper motor signs that would have shown-up in the clinical exam. You said that your clinical exam was fine.

I don't care if that neuro is respected or not. That respect must be based on his knowledge of other conditions like stroke, carpal tunnel, etc. I'm glad to see that you're going to a neuromuscular specialist because they are the experts and will be able to help you.
 
It's funny; back in October when I was spending far too much time on Dr. Google, I saw a comment on tongue fasiculations by a Cleveland Clinic als neuro who said "In my experience, tongue fasiculations are never benign." I read that and only weeks later the ent doctor I went to said the same thing, and 2 days ago my neuro said it again...word for word. These people all believe it, or read the same medical literature. :)

trfogey noted that emg does not measure muscle weakness, but wright noted that lower motor neuron issues would be noticed. How exactly does emg help point toward or away from als?

One other question. My GP and the neuro I am seeing both agreed that I have visible muscle atrophy at the base of the thumb on my right hand. They tested my wrist and forearm area quite extensively this time during the ncv, and also did several emg needles in the forearm. How could all that be 'normal' if there is noticable atrophy?
 
rhythman;110401 How could all that be 'normal' if there is noticable atrophy?[/QUOTE said:
... if the atrophy is from a cause other than motor neuronopathy.

I don't know about the observations of neuro regarding tongue fascicuations. You probably would benefit from having an EMG of the bulbar region. That said, some neurologists feel that interpretation of EMG findings (of bulbar) is not completely reliable. The skill of the neuro doing the test is extremely important.

I'd heard (anecdotal) that fascis in the dead center of the tongue are more worrisome than along the edges.

IMHO it would be in your best interest to push for that referral to the major teaching hospital. Good luck!
 
The tongue twitching thing is certainly debated... clearly some neuros seem to be more bothered by fasiculations in the tongue than fasiculations anywhere else. That being said, there are plenty of people with benign fasiculations who also get them in the tongue-- there are several threads in the BFS forums about them and whether or not they are more insidious than other fasics, and it's clear that plenty of people who don't have ALS get them. That should be reassuring!

Rhythmman-- you and I are similar for a few reasons. 1) Fasics in the tongue. I have gotten them in the past and have been getting significantly more lately. I'm hoping this traditional wisdom on behalf of these neuros is flawed and outdated! 2) Noticeable atrophy in the right thumb muscle, but still have clean EMG.

I have asked my doctors how I could have atrophy and no problem on my EMG. Even if the atrophy was caused by something OTHER than ALS (injury, carpal tunnel, etc) I would think it would show up. But even though they can't answer that question, they say it's very good news that the EMG is clean, and I believe them.
 
One comment on EMG, weakness and atrophy. ALS is a disease of the motor nerves that carry signals to muscles. One of the first things that happens as the nerve cells weaken is that they withdraw connections from the muscle fibers. However initially this does not cause weakness, because other nerve cells sprout new branches at the end (similar to how a tree limb can sprout new branches) and these re-connect to the muscle fibers. This process is called denervation and re-innervation. It actually shows up on EMG even before muscle weakness occurs.

Later as the disease gets worse the re-innervation process cannot keep up with denervation. Too many nerve cells are dying and there is a limit to how many new branches the remaining ones can send out. At this point some of the muscle fibers lose connections and can no longer contract. This is when weakness first begins. However many people do not notice weakness even in this stage, for a few reasons. First, we never use the full strength of our muscles. Always we have some fibers firing while others rest. So losing a few percent of muscle fibers still lets them work at full strength, just using a greater percentage of their total capacity. Also, even when this gets worse and a substantial part of the muscle fibers are not working, even then people may unconsciously switch to using other muscles to compensate. They may change their posture, gait, or patterns of movement without realizing it, to spare their weakened muscles. I have read that often as much as 50% of the muscle fibers will have lost nerve connections before people notice.

Finally atrophy happens when the muscle fibers are not being used. The body automatically sends resources where they are needed. A muscle which is used hard will get more resources and will grow. A muscle which is not being used will be broken down and the components sent elsewhere in the body, or just metabolized for energy. The rate varies from person to person and also with nutritional status. This is one reason people are advised to keep their weight up; if you are losing weight your body will be more aggressive about eliminating unused muscle.

This is why in ALS you typically see first a bad EMG, then weakness, then atrophy. If you have weakness and/or atrophy with a clean EMG then that would not be caused by ALS. (Well actually as Wright says, upper motor neuron failure can also cause some weakness, but that produces other symptoms that are very noticeable.) Note that other things can cause atrophy, including simple disuse of the muscle. If it is sore or feels bad and you are not using it, it is natural to have atrophy, especially if you are not eating well. A body builder at the gym gets big, but if he stops his workouts and supplements his muscles will shrink, and that is atrophy.
 
Hal,

That was one of the best, easiest understood explanations about denervation and reinnervation I've ever seen! That should be very helpful to those on this particular forum. Maybe you should start a new thread with that explanation and ask AL to sticky it!
 
Hal, let me just say ditto... LOL... Nice post thanks....
 
I made a new thread and made it a sticky titled EMG weakness and atrophy. It's at the top of the thread page. Hopefully others will see, read and pay attention to it.

AL.
 
I concur...excellent post Hal with a great explanation.

If the muscle weakness is ultimately caused by denervation outweighing re-innervation, why does the nerve conduction velocity test not detect this? I asked if the normal ncv results would rule out als and the neuro said "No, but they allow me to rule out a number of other things."

I understand from several wonderful responses to this thread that my emg should not have been clean, as it was, if my limb weakness these past few months was a result of lower motor neuron issues as seen in als. It is interesting then that the neuro wouldn't rule out als; although he was specific about saying he wouldn't rule out bulbar. I'm sure he must know what a clean emg represents.

I always put a lot of faith in the competence of the doctors, but who knows? Perhaps he did the emg in a half a##ed manner and doesn't feel he should rule out anything yet. He did only put needles in 3 or 4 spots on each limb, but he did get me to completely relax and then offer resistance with every needle location. I assume he knows what he's doing. :)
 
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My EMG portion of the test was apparently totally normal, but they found some minor abnormalities in the NCV. They said there was some reduced nerve conduction speed in my left elbow... it was never properly explained to me by the doctors, but from what I've gathered on these boards, that points AWAY from ALS.

Rhythman-- Your doctor may just be taking three of your specific symptoms-- choking, nasal voice + tongue fasiculations-- and not wanting to rule out bulbar based on those. But I would ask him for a more thorough explanation nonetheless.
 
Can the emg note the difference between benign fasiculations and those caused by lower motor neuron problems? The neuro told me that the calf fasiculations he observed were the only ones found during the emg, but he did not seem concerned. I just wondered if this might be a result of the fasics 'looking different' somehow on the test.
 
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