Severe Fasticulations

[Mountain]

I know this issue has been done to death, but it also appears like there is contradictory information.

I've been suffering fasciculations in my left calf for some weeks. Lately, they have spread to my right leg and occasionally to both arms.

By suffering fasciculations, I do not mean "once in a while." I mean constant, 24/7, every minute of every day in my left leg. And it is all over the leg, from the buttocks almost to my feet (although, interestingly, almost never in my foot itself. The constant fasciculations in both legs have existed for three weeks now, the sensations in the left leg, as mentioned before, have existed for considerably longer. It gets worse and more widespread every day. It also continues after I flex.

Looks much like the video a PAL posted on YouTube - https://www.youtube.com/watch?v=u421daHAgpY

Thus far, no loss of strength I can see. I can jump rope, stand on my toes, and run. My balance is worse on my left foot than my right, but I think that's always been true (I am right side dominant.) I feel weaker of course, but that may just be my mind playing tricks on me. There is no loss of function. Also, no twitching in throat or tongue.

However, I'm sick with terror because the twitching just will not stop. It makes it hard to even think about anything else. It's not like I can even get used to it because it is all over the leg. And I've read plenty of stories from PALs who said fasticulations came first. I've had plenty of muscle twitching before post running or working out, but this is far, far different. Nothing even remotely close to this.

I have a primary care appointment tomorrow and will try to get an EMG as soon as possible.

I'm posting here to see if anyone had fasciculations of this severity and, if it wasn't ALS, if there was another diagnosis. I'm familiar with BFS, but can BFS be this severe and this continuous?

Will update with status after EMG. Feel like this could be a good piece of evidence for the never ending "do fasciculations precede weakness" debate.

 

[Atsugi]

I have, from time to time in my life, had twitches exactly like you describe and just like that video.

I do not have ALS.

What were they? Amusing. They went away. I guess it was stress. I know that when I had stress, I had muscle movements of different kinds. But now, whenever a muscle just goes off bouncing around on it's own, I say "Hey, look at that! Cool."

I've had some sort of twitching from time to time for the past 40 years.

 

[Mountain]

Appreciate the reply.

Normal physical today, was given blood tests and tests for Lyme. Should have those Saturday. No hyperreflexia according to doctor, which is good. Neurologist appointment next month.

Doctor was very honest. He said the muscle twitching was very severe and troublesome. He reassured me I'm not just being a psycho and that I was right to be concerned. He said ALS is possible. But he used the example of having a severe headache and fearing you have brain cancer. I mean, yeah, you might, but it's not very likely and it's a bit insane to leap immediately to that conclusion. And there is no evident atrophy, weakness, or hyperreflexia.

He emphasized though that he is not a specialist and said as hard as it is, just sit tight for a month and monitor progress, noting any weakness. The neurologist will be able to give me some real answers.

Still, the twitching is getting to the point where it is driving me nuts. It's constant. It hasn't let up in more than three weeks. It continues even when I flex - I flex my calves as hard as I can and I still see the twitching. And I don't think it's stress - the main reason I have stress in my life right now is because my legs, from my butt to my ankle, feel like they have something crawling in them! And occasionally one or the other of my arms throws in a jolt just for fun.

My lower calves also feel oddly numb. But my feet feel fine. Rarely twitching there and can stand on one foot or on my toes without a problem.

Will update with results of blood tests. Again, not that I think the world is deeply interested in the health of some random guy, but if I have learned anything over the last couple weeks, it's that I'm not alone in being concerned about this. So many ALS stories out there begin with a seemingly "benign" twitch. I hope what happens to me can be instructive.

I'm still scared, though less than yesterday. Not having hyperreflexia was a relief. But I do think something is wrong, a pinched nerve, a spinal issue, something. I've had muscle twitching my whole life after exercise or running. These feel different, ominous. They're so systematic and relentless. And that awful concussion I had a few years back is haunting me.

It's not health anxiety. Something is off. Just hope I can figure out what it is and that it's not ALS.

Am making a donation to ALS Association as soon as this is over either way. We need a cure.

 

[Mountain]

> Another thing you should remember is that ALS is asymmetric, meaning if it were als it would start in one calve muscle and not both.

Thanks for response. But what worries me is that it did start in one - the left. And it spread from there after a month or so. And now it is in my left shoulder, though not very often there. But it will not stop in my legs. Not for a second. It's driving me mad. Definitely worse in the left than in the right, but present in both. There's almost a burning feeling. Sometimes, it's more regular in my thighs than in my calves.

Of course, it disappears when I walk around. My left foot feels a little unstable and weaker - I've noticed some problems with that for many months. But it never got worse and in some ways got better, which makes think it is unrelated.

I even went for a jog today. Didn't feel great, but as you might expect, I haven't been working out as much since this started. No stumbling, no falling on my face, even did some quick high knees running on my toes. Legs feel rubbery and weak but I did it.

Blood tests all normal. That's actually frustrating. Was hoping doc would say, yeah, get more magnesium. No such luck.

Can you get something like this from sitting wrong? Or sitting too much? Can you give yourself nerve damage that way and does such damage create these kinds of symptoms? Or can ALS truly present in this kind of way? I mean, this is severe, constant twitching to the point people who have looked at it are actually scared. GF actually gave a little shriek when she saw how it was just rippling underneath my skin. And my blood ran absolutely cold when I flexed as hard as I could - and saw the twitching go on anyway.

But I've been out of the gym so I can't definitely say one way or the other that I've lost strength or speed to an alarming degree. I'm afraid I won't know till one day till all of a sudden I will not be able to control my left foot.

 

[Mountain]

Symptoms getting worse, getting into my left arm occasionally. Left foot feels weak at end of the day, as if the joint (ligaments? I don't know) connecting my foot to my leg are hurt.

No foot drop though. Yet. Standing on toes fine.

Second I lie or sit down, constant, never ending rolling twitches in my left leg, with the right joining in for fun almost as often. Can even feel it standing occasionally.

Neurologist can't see me till Oct 27th apparently.

Yes, I know people are saying it is most likely benign. I read the sticky. But can constant, severe, every second of every day twitching concentrated in one leg going on for a month straight simply be harmless? I haven't had a drop of caffeine in weeks. Blood levels are normal, not lacking magnesium, etc.

There has to be some kind of disruption going on. Even if it is benign, this doesn't just happen. There has to be some underlying cause.

Has anyone had anything like this been anything other than ALS? If so, what was it?

This is terrifying. I feel like I'm losing control of my body.

 

[GregK]

Go back and strike every mention of twitching and feeling.
And you've pretty much eliminated your complaints.


Because those do not indicate ALS.

You should obsess over BFS (but NOT here! Search for the BFS forum)

 

[Mountain]

Initial neurologist appointment after I found one who can see me sooner - reflexes normal, no Babinski sign (at least he didn't mention anything about it and my toes didn't seem to react). Left foot definitely more unstable balance and left leg confirmed for being smaller. But, as I'm right side dominant, that's not overly concerning. Can stand on toes, can stand on one leg.

Symptoms themselves show no improvement, spreading somewhat, more common in arms. Both legs, both arms, more often in left, more or less continuous, 24/7 in calves and thighs, occasionally in ankle. Though oddly enough, no twitching in feet or hands. Thighs getting absolutely rocked. More fatigued than usual but a million explanations for that.

Obviously, many explanations for this. Still, neurologist, like primary care physician, said twitching like this shouldn't be ignored. ALS typically doesn't present this way but it is an infamously unpredictable disease so EMG scheduled for Oct 12. Follow up appointment on the 26 to discuss results.

Will update then. Whatever happens, hope it will be of use for others who get these symptoms. Can't help but notice vast majority of people who visit this forum are going to the "Is This ALS" section.

Please donate to the forum. I know I will once I know my situation.

 

[lgelb]

Mountain, people who have something other than ALS generally don't stop back by here, but their lack of response to your question doesn't mean that your twitching is ALS. I very much doubt it is given the speed with which it went from the L calf to all proximal muscles in a couple of months by your account. Not saying it's nothing, and an EMG will help sort it, certainly.

I'd spend now till the 12th doing what makes you happy, as hopefully hanging out here isn't it.

Best,
Laurie

 

[Mountain]

Got a rude shock this morning when I stepped out of bed and almost fell to the ground because of pain in my ankle (not weakness, pain.) Been kind of limping all day. Rotating my left foot (same side as the fasciculations) sounds like a concrete mixer, whereas right seems fine. I don't notice atrophy, but then, what do I know. Again, though, not simply weakness, but a sharp pain.

The fasciculations are constant and severe. No cramps. Mostly concentrated in left leg, the entire leg at this point. Occasionally in arms, but not terribly often. But right calf very active too. I can't even sit down without it immediately setting in. If I have weight on other foot, I can see it even when I stand. I'm sitting writing this and it feels like there is an electrical current going from my left thigh all the way down to my foot. Even an occasional numb feeling in the toes (but don't see any twitching there).

It seems insane that the two options are benign or ALS. Isn't there anything else? This can't just be nothing. Something is going on besides "oh, get more sleep." But suppose I won't know till EMG.

Whatever happens, I hope this post helps people who are suffering same thing and driving themselves insane with worry. This is bizarre. Going from perfectly fine one day to muscles twitching constantly and now feeling like my foot has some kind of weird injury akin to a sprain. Of course, it's also possible the foot injury (if it is an injury) has nothing to do with twitching. And again, reflexes, according to doctors, were normal.

Last post till 12th unless I can get EMG moved up.

But two questions for those here -

1. Is hyperreflexia considered an early sign of ALS or does it generally present only after the disease has progressed?

2. Is there anything where you can have no hyperreflexia but still have constant fasciculations? Trapped nerve, neuropathy, PLS, anything?

 

[Lkaibel]

ALS rarely starts with twitching, in truth. In addition your pain so bad you almost fell over does not sound like ALS at all, at least not as a presenting symptom.

The neuro will no doubt do a full EMG because it's what they do with intense twitching to rule out various conditions, but I would bet no ALS. Wait til you see the neuro and don't borrow a terminal diagnosis from aggravating symptoms.

 

[Mountain]

Had my EMG for left leg and left arm, waiting on results.

Symptoms worsening. Constant 24/7 in legs, now getting into my feet. Arms and lower back joining in now. Walking weird as well.

That said, I can't really say muscle weakness per se. I can squat. I can run. I can stand on my toes. I can jump. I'm now feeling my nerves go nuts when I'm running though (itching, slightly painful feeling shooting through legs). Some tingling and buzzing at night now too.

Will update and again, my purpose here is to be educational for others going through this and fearing ALS. I mean, these twitches are SEVERE. This isn't a once in a while and I'm freaking out. It's like the video above 24/7, both legs, for more than a month now.

I know all the reasons people are going to tell me I don't have ALS. Obviously, I hope you are right. But what else could it be other than BFS (which is just a fancy way of saying "we don't know" anyway?)

 

[Atsugi]

You're right to follow up with the doc. And you're right that this isn't the way ALS comes on.

Lots of strange things can ail you. Almost all are temporary and resolve themselves.

If you start a pool, I'll take "spine pinching nerves" for $100.

 

[Mountain]

Some good news - EMG test for leg leg and left arm NORMAL.

Some bad news - follow-up confirmed I DO have hyperreflexia in left leg, and some "excitable" reflexes in right leg and arms. My balance is also apparently a little off, as is my gait. However, all subtle enough that it might not be anything truly serious. No Hoffman, Babinksi, etc.

Doctor "doubts" ALS. I have been referred to physical therapy. He suspects sciatica, though I have no lower back pain and have never heard of that causing fasciculations before, but who knows.

Symptoms themselves continuing; worsening. But limited to twitching. No weakness, no atrophy. Still working out, if only to somehow prove to myself I'm not getting weaker.

Still, bottom line, EMG normal. Saw some other mentions here of someone "passing" an EMG and then getting ALS a few months later but seems unlikely.

I'll update if/when I get a definite diagnosis, if symptoms improve or get worse, or if the next EMG (probably in six months or so) is different.

Will check this post for next day or so if any of you all have any guidance or this seems similar to anything you have seen before.

 

[Mountain]

Should also note clonus identified in left leg.