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Cmishh

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Oct 6, 2016
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Learn about ALS
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US
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MI
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Detroit
Hello..

I have been very hesitant in posting something here. I do not want to waste anyone's time but my fear has bubbled over some.
So I am 44 m and 'on paper' I always check out healthy at my physicals. I am fairly active with exercise however over the course of the past few years I have dealt with post exercise fatigue that I have always myself deemed an issue. So basically I've been searching. About a year ago I noticed pain in my tailbone that led me to get 2 MRIs, one on the tailbone itself and the other on lower back. Both pointed to mild degeneration, nothing major but the tail bone is still an issue. I have been categorized by an ortheopedic doc as 'unusually stiff' and I feel this has gotten progressively worse over the last 6 months.
So putting that aside, about 10 months ago I noticed twitching in my calves which I didn't think anything of until of course I googled and all this stuff about ALS popped up. Admittedly I am anxious even health anxious person to begin with so this has caused me to be on again off again preoccupied with the idea that I am on the edge of ALS. The twitching has been relatively constant during this time, usually a bit worse after exercise but none the less consistent. No signs of weakness that I know of either. So what has ramped up the anxiety is for about the past month I have just felt terrible. Run down all the time, just not myself which has led me back to my doctor. Still fearing that these calf twitches are more than just BFS.. he 'appeased' me and sent me to get an EMG on my legs. so basically the nerve part of it showed no issues. But then he confirmed what I already knew that there are a few fasiculations in one muscle (his words). He suggested going for upper EMG and seeing neurologist. He didn't make it sound like it was a big deal but should be followed. My PcP did not seem very concerned either.
So fast forward to me searching about EMG results. Does fasiculation on an EMG always point in the direction of ALS? I have been trying to tell myself that I have had no weakness over this 10 month period and other than the twitching, and this new crappy month long punk feeling I've had nothing really has changed. I do however seem to notice twitching sometimes in my arms now and a heavy feeling in both my legs and biceps even if I haven't worked out. I know I am all over the map here and I am sorry. Basically I want to know a couple things. Does this time w twitches and no weakness account for anything as to being able to tell myself I don't have this despite that EMG being 'dirty'. I swear I wish I hadn't had the EMG at this point..
the second thing would be does a few fasiculations of a muscle on an EMG have to point in the direction of disease beyond BFS?
I hope this makes some sense and is not looked at as me wasting anyone's time here, that is not my intention. I just don't know how I've gotten to this point where im actually thinking this way from what started as calf twitching. I have been getting tested for auto immune stuff and testosterone ,thyroid and it all comes back normal. So I can't explain the month long flu like feeling but aside from the twitching, it's that EMG that is causing me pause now. And of course I say this based on things I have read on the internet in forums like this which admittedly are not good for someone like me.
Anyway any insite as to weakness in relation to these twitches would be great. I mean after almost a year wouldn't I be noticing weakness like that is described when you look at ALS symptoms?
Ugh.. I'm sorry. I feel like I'm doing exactly what has been asked not to. Don't mean to ... just scared about things right now. I thank you for your time in reading this. Cmishh
 
Hi

If the only thing seen on your emg was fasciculations that is not anything I would worry about. I would not call it in my mind a dirty emg ( which is not a technical term anyway). Certainly people with bfs sometimes have fasciculations on their emgs and I have heard such an emg called a normal variant even.

There has been an incredible amount of discussion about twitching preceding symptoms. Properly documented cases where that really happens ( as opposed to simultaneous onset of twitches and weakness) seem rare and the longer that you go the safer who should feel. I think people on the bfs boards used to say 6 months and safe.

I believe most PALS started with weakness then twitching ( I did). Follow your doctor's advice but don't worry about ALS. Does not sound like it
 
Try going to the top of this forum section and reading the post titled READ BEFORE POSTING.

It really does answer all your fears and is our official position.

All the best, ALS is not on your radar at all.
 
An EMG considered suspect or "dirty" features something called chronic and active denervation. To be truly and full suspect, it needs to occur in at least three areas of the body. Next, the is a bit called short wave abnormalities. What we commonly call "twitches" on a EMG barely figures, as others have noted. Oh, and you can have all of the above on an EMG and NOT have ALS, plenty of people have. I feel like EMG is one of the most poorly understood tests out there.

Your symptoms do not sound like ALS at all. I get twitches so hard sometimes they look like jumping jacks under my skin. Other times, I get little ones around my eyes and face. Those can be pesky and persistent. In fact, I twitch enough that I took a muscle relaxant once for an injury and was startled at what it felt like after a few days to not twitch once in that time. Twitches are common, common, common and there even appear to be some Doctors who don't really get that. I HATE how the Internet "discovered" ALS and now people Google the super common "symptom" and get scared.

Take a deep breath a try to relax. Stay far away from the dreaded Doctor Google.
 
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