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mbernabe3

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Oct 11, 2015
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Learn about ALS
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US
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California
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La Puente
Hello, again, my name is Mario and I previously posted on this forum around October of 2015 about my growing concerns of having ALS. Up until to that point, I hadn't had an emg test to confirm or disconfirm my fears of this disease, and I finally managed to get myself tested on June 29, 2016. This emg test was conducted by a neurologist, who I think wasn't a neuromuscular specialist, and the results showed that there wasn't any evidence or signs of ALS.
At first I was in disbelief because I was convinced there was something wrong with me, then a sense of relief swept over me and it seemed like the end of the doom and gloom was imminent. But, alas, it was only a reprieve from the anxiety that still burdens me to this day.
There are many contributing factors to my persistent anxiety of having ALS. My main concern is possible atrophy calf, the muscles reliably twitch and vibrate. Just to be clear, I have fasciculations on every part of my body, including nonstop twitching in my hands, under my biceps, and in my stomach. Truth be told, the fasciculations are the least of my worries, but what has bothered me are the incessant cramping in my right thigh and right shin muscles, which are most bothersome when I'm simply standing and has made standing a physically laborious task and has made the possibility of a foot drop increasingly probable in my head. Other symptoms include some balance issues when I walk, chronic fatigue, muscle stiffness, possible breathing problems, poor posture, trouble getting out of bed, and constant headaches or migraines when I wake up. And my newest physical development is wrist and hand stiffness on my right hand, which has seemingly caused a perceived decrease of hand dexterity, and in turn, I interpret as weakness.
Admittedly, I still exercise on a regular basis, and I've always been an active person, but not as much as I used to. The possible atrophy seems exclusively evident on the right side of my body, or at the very least, the muscles on the right side of my limbs seems smaller than that of my left side. When I flex my right thigh and calf, the muscles reliably twitch and vibrate in the midst of flexing and they've progressively diminishing in size. Although the mere mention of regular exercise and with no glaringly obvious weakness should put my mind at ease, the possible worsening of my symptoms combined with possible muscle wasting on my right limbs have instilled doubts of the emg results into me, forcing me to consider to possibility of a false negative. And this is all happening when I'm about to turn 25 in August, when I should probably be in my physical peak as an adult.
As soon I can, I'm going probably revisit the neurologist that performed the emg, and ask for another emg and an evaluation of the muscles I think may be wasting. To make matters more complicated for me, the neurologist did notice that my right tricep was smaller than left tricep right before he conducted the emg test, and found it interesting, but he didn't notice anything else of significance that day.
So, if I may ask, I have some questions about the reliability of the emg and ALS, and if any commenters feel I don't have ALS and the description above doesn't correspond to the symptoms of this condition, feel free to be blunt and try knocking some sense into me:
1) How likely is it that my emg or any other emg produce a false negative? Is it possible?
2) If I have ALS, is 10 months after noticing my first symptoms (late August 2015) enough time for an emg test to detect the denervation from ALS?
3) As time passes, do the chances of detecting ALS increase, or unambiguously, the moment ALS initiates, the chances of detection is equal throughout the course of the disease?
4) If I have ALS, how common is it to have weakness as the last symptom or be preceded by fasciculations and atrophy?
5) If I have ALS and considering the amount of time that has passed, would it be a normal rate of progression or a slow rate?
6) Have there been cases of a false negative, and if there has been, should it have taken less than a year to notice undeniable symptoms of ALS?
7) Does it matter that a non-specialized neurologist conducted the emg, as opposed to a neuromuscular specialist?
I apologize in advance of how annoying these questions may be to some of you, especially taking into account that some of these questions may be partly or fully addressed by the stickies and other websites that have information on ALS that I have read, but I have been increasingly doubtful of my emg and tried to be as specific as possible with questions that seemed to correspond with what I'm experiencing and seemingly unaddressed. In fact, if these questions are maddeningly frustrating and insufferable, I hope you don't burden yourselves with my queries. But for those who are willing responders, don't be afraid to pull the trigger: I welcome it. And for those with this senseless disease that do respond to this post, I would be particularly grateful.

Let me know if you guys can see the pictures of my emg results. I'm going to try to have them as attachment
 
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I have removed the attachments because they have your name. This is for your own privacy and protection. If you want to post them please block your name and any other identifying data.

To answer your questions
1anything is possible but it is unlikely. Stories of normal emgs preceding a diagnosis generally are cases of upper motor neuron onset which is detectable on clinical exam preceding lmn disease which is found on emg
2yes
3 it does become increasingly obvious but a clean emg and clinical exam should suffice no matter what stage
4vanishingly rare
5 you do not but to be questioning it at 2 years would be extremely slow- glacially- a lot of PALS are dead in this time frame more are paralyzed
6 see question one
7 i don't know. If he was experienced in emgs probably not
 
Thanks for responding and taking precautionary measures for my identity, Nikki. I didn't know my name, birthday, and the name of the clinic and neurologist would be problematic to mention. If I can pester you with one more question, in terms of the emg, have there been cases of emg results that have been misinterpreted or improperly conducted by mere incompetence?
 
Of course there have been. eMGs are only as good as the examiner. However, from reports here, it seems these issues are usually a problem of over interpretation rather than under. I can remember a number of cases where someone was told ALS only to have the ALS clinic say no signs on EMG. I can't think of a case of the reverse though it probably has happened somewhere. It is a good idea to find out the qualifications of doctors you see which can be done online.

Re privacy. Public sites are heavily data mined. The information on your reports could be used by nefarious persons. You might also find there is a time when you would not want friends, family, employers and clients happening on your threads here
 
Thanks, again, for your time and response, Nikki. You've been helpful.
 
As Nikki has pretty much summed up, highly recommend likely this has anything to do with ALS. Rest, relax, follow up with your Doctors and be well.
 
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