ALS worry

[Uriel]

I had an EMG done about a month ago. it was done almost 3 months after fasciculatons started all over my body specially my calfs. Here is the final report from the EMG:
Abnormal
Based on extensive study of the left leg, arm and thoracic paraspinal muscles, there is no EMG evidence of a diffiuse motor axon loss process, such a motor neuron disease. fasciculation potentials are identified in distal leg and foot muscles, without accompanying evidence of active or chronic motor axon loss. A prominent cramp discharge was identified in the posterior tibialis muscle"
My fear was that I read that sometimes an EMG can be normal if done to early or if there is upper neuron damage only, should I be worry about this cramp discharge? My fasciculations continue to happen and I wonder if I should do another EMG and when would be a good time to do it. By the way my EMG was done at the Cleveland Clinic by what I hear one of the best neurologist there. He told me he was 95% sure there was nothing to worry about.
i wonder what the other 5% meant?
Thanks
Uriel
Thank you for taking the time to answer my questions

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

It is true in general that in the evaluation of ALS, an EMG may initially not show major abnormalities. However, with ALS, as crude and unscientific as it sounds, one of the key diagnostic aids in such cases is time: an ALS patient, over a 3 month period, would develop some features to suggest ALS even if initially all that was present were fasiculations. If weakness, spasticity, swallowing difficulties, or other problems have not newly developed in recent months, the probability of ALS goes down to even less that 5%. If new symptoms do not develop, even if fasiculations persist, another EMG is usually not indicated.

Benign fasciculation syndrome, which I will abbreviate as BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low. It must be emphasized that in the vast majority of cases fasiculations are benign meaning that they are of no consequence and are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after recent strenuous activity or muscle over-use. It is important in such cases to reduce stress/anxiety levels and to reduce caffeine intake.

When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.

While fasiculations can occur in other neurologic disorders, again, it would be reassuring that over several months, in the presence of fasiculations, other symptoms have not developed.

Continued follow-up with your neurologist should new symptoms arise, or if otherwise indicated is recommended. Contacting your neurologists' office if you continue to have anxiety about your condition and/or other questions may be a good idea.  

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Uriel]

Thank you so much for answering my question. One thing that has me concern is the feeling that my right calf feels that is on the verge of cramping. Would this be spasticity?
It sometimes my calf feels a bit tense. I can ride my bike or run on the treadmill for an hour and I don't feel any weakness nor I get cramps, but usually my fasciculations after I work out are really bad. Also I notice that my fasciculations even though happen through out my body are more constant in my calfs where they happen almost the whole time I'm awake everyday on and off. On the rest off my body they come and go here and there. By now it has been almost 4 months since my fasciculations started, if I was to have an EMG follow up done, when would you think was a good time so that something like ALS could be ruled out?
Thank you again for taking the time to answer my questions

Uriel

[TJM24]

You sound like you have BFS (benign fasciculations syndrome).  Check out this site.  Lots of people with identical symptoms and even the lower leg cramping.  I had twitching start all over back in february.  I went thru the emg, neuro exam, follow up neuro exam.  The twitching migrated around, face, arms, hand, feet, and especially the calves.  My calves were so tight and crampy I couldn't run for two weeks.  My neuro said its just benign fasciculations and to try to avoid caffeine, stress, and get restorative/quality sleep.  Anyway, check out this site: http://www.nextination.com/aboutbfs/

[lisa5043]

A couple of years ago i was diagnosed with lyme and began reading alot.  I remember coming across an article of a study they did in russia on als patients .  In this article it said that 70% percent of participants in their study that had als also had previously had lyme. Also, I have read that co-enzyme Q10 has shown to be beneficial and resvertrol to people with als.  Not saying that you have it.  I'm just passing on the info that I have come across.