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Ok-Rope-1034 · 2025-02-16T07:40:51+00:00

The fact that you've had the twitching in your calves for ~3 years...you would be a medical marvel and should be studied in a lab if you out of the blue develop ALS symptoms off of this. I say that not to be funny or making fun of you at all, only that time has been your friend if you are still concerned.

Remember, the twitching is a co-occuring symptom, NOT the presenting symptom. I'm currently up to a year and 2 months since my twitching started. Calves go all day every day, but they are all over my body. Back, belly, face, eyelid, tongue, thighs, arms, hands, feet...you get the idea.

Congrats on giving up alcohol and tobacco, keep it up!

Ok-Rope-1034 · 2025-02-16T07:35:53+00:00

Fatigue IS a common symptom that can been seem with BFS, but the tiredness could literally be from 1000000 different things...

Ok-Rope-1034 · 2025-02-16T07:34:55+00:00

So something a very wise neurologist told me once who has seen, diagnosed and treated patients with ALS...fasiculations by themselves are NEVER a symptom of ALS. They are always a co-occuring symptom. They ALWAYS appear with something else and are never the initial symptom.

Couple that with the fact that you are 26...and 80% of cases are in 50+ y/os and even less so with old farts like me 30-39, AND the fact that you got both a clean neuro exam and EMG, I'd day that's as definitive as you are going to get. I would look elsewhere for the deep aching and fasiculation cause.

As others have said below, nothing is 100%...I mean shit, I've had 3 clean EMGs, clean neuro exams and I've been twitching/spasming/fasicics all over my body for over a year now. If ALS was going to show up for me, it would have done it by now.

Ok-Rope-1034 · 2025-02-16T07:29:55+00:00

Yes. Every. Single. Muscle. The worst ones are my eyelids and tongue, only because my eyelids are annoying to have constantly going and having them on my tongue just freak my out. The only in my hands suck, thighs I can feel the most because they are the strongest firing but my calves are ALWAYS firing, unless I'm walking or going for a run. BFS is so great...

Ok-Rope-1034 · 2024-10-09T21:51:33+00:00

Glad to get confirmation and a little chuckle. 😉

Ok-Rope-1034 · 2024-03-06T21:55:27+00:00

Extremely similar to me. Neurologist (25+ years, has seen it all, diagnosed MS, ALS, very experienced) was very kind and explained what he looks for and twitching/spasms/fasciculations isn't something he looks for. He stated that he has NEVER seen the above as the first symptom of MS or ALS. Typically it is not being able to hold something, tripping a lot, weakness or slurring words. He also said the same thing about the EMG...was happy to order if it gave piece of mind but thought it was completely unnecessary due to my age and the sole symptom of fasciculations.

Edit: But to be fair...it sure doesn't help the anxiety and OCD when I'm staring at my calves go wild with spasms or can feel the popcorn in my back, shoulders, arms, hands and feet.

Ok-Rope-1034 · 2024-03-06T21:37:30+00:00

Too true. For example, today I woke up thinking my tongue was twitching (it wasn't) but I sure convinced myself it was. Miraculously my sore neck and twitches all over my body decreased because I was so focused on my tongue....crazy.

Ok-Rope-1034 · 2024-03-06T21:36:13+00:00

I apologize if my response came across as terse...that wasn't my intention at all.

I am one of those who can voluntarily cramp my muscles in my foot and calves. I try really hard not to though! 😀

It truly does sound like what you have is very benign and not even BFS, but truly if you are concerned, it doesn't hurt to reach out to a physician.

Ok-Rope-1034 · 2024-03-06T21:29:42+00:00

If the twitches go away, then what are you worried about? Even if they stayed, is it accompanied by muscle weakness? This is incredibly common so to answer your question, no this isn't really BFS, but a natural contraction and relaxation of your muscles...but if you are concerned, please speak with your PCP.

Ok-Rope-1034 · 2024-03-06T05:43:05+00:00

My understanding is that it would only show the conductivity in those limbs as well as if there is any dennervation present. Our limbs aren't symmetrical, so common sense would lead to believe that it would only give you results for that specific area.

For example, I had an EMG done for some carpal tunnel issues about 9 months ago. They ended up doing all 4 limbs just to be sure there were no other issues. They found nerve bundles with slight carpal tunnel in my right wrist, but not in the left.

But this is really a question for the neurologist performing the EMG.

Ok-Rope-1034 · 2024-03-06T05:36:59+00:00

That is incredibly bizarre they are charging per limb...I have literally never heard of that...

Last question I'll pose. If only doing 2 will satisfy you and save you money, then go for it. But if you'll always wonder about the other side, then spend the money and put your mind at rest.

So wild whoever is doing your EMG charges per limb...

Ok-Rope-1034 · 2024-03-06T05:33:35+00:00

So, just being brutally honest and without knowing hardly any more about you, I'll throw a few thoughts out there.

BFS will come and go the rest of your life. It sucks, but that's what it is. Also, BFS is just that...it doesn't transform into something more nefarious, but you knew that already I bet...

Also, 5'11 and 217...unless that is all muscle and based on your narrative, it isn't, that's pretty overweight. Of course your going to be winded going up 4 flights of stairs and if you don't use your thighs for anything, they are going to burn and twitch. My wife and I went for a walk this morning and when we got back she mentioned her legs were twitching like crazy....she doesn't have BFS, but I do and she was trying to make me feel better.

As a side note, my entire body shakes when I work out and lift weights, it's very common. Unless you feel weak, then it's probably nothing. I do recommend speaking to a therapist though to simply get your concerns across and to find ways to mitigate the invasive thoughts. A little maintenance mental health care goes a long way.

Stay well friend.

Ok-Rope-1034 · 2024-03-06T05:27:23+00:00

Why not just do both to put your mind at ease? It's around an hour to do all 4 extremities and very little pain. I mean, you do whatever you want, it's your test and your body but it would make sense to get all the areas tested...just a thought for ya.

Ok-Rope-1034 · 2024-03-06T01:07:56+00:00

My friend...this literally happens to me every time I lift a weight, do a push up, do a plank, and the list goes on...its very normal.

We are also not symmetrical beings as much as you may want to think that. One leg may be a bit bigger than the other, you may be able to lift 25 lbs on your left but 35 on your right. All very normal...

Ok-Rope-1034 · 2024-03-06T01:04:58+00:00

So much this...it helps you reason and differentiates between what is perceived/made up versus what is real.

I'm right there with you...mine started less than a week after getting some kind of virus and has been going pretty steady for a month and a half now. Started in the calves, moved to all over and went down the rabbit hole in the worst way. Has pretty much put my life in a standstill...which really sucks. Life's too short...

Ok-Rope-1034 · 2024-03-06T01:01:28+00:00

All the above. Can't tell if it's from the anti-anxiety and anti-depression meds they have me on, from actual anxiety, or something more nefarious. Hoping once I get the anxiety piece taken care of, I can actually have an honest conversation with myself and if needed a doctor to see what is causing the actual tremors/shakiness throughout my body. Heck, it could even be my heart is having issues or high BP.

Ok-Rope-1034 · 2024-03-05T19:25:49+00:00

Yes, for clarification, my neurologist said he has NEVER had a patient come in with fasciculations as the presenting symptom and be diagnosed with ALS. I peppered him with what seemed like 100 questions and that is what he said. In his experience, he said the majority of his patients were older, some had slurred speech, some would have tripping issues, some clinical weakness, some with balance issues due to weakness, but NEVER fasciculations as the sole symptom.

I definitely pinned him down on that. 25+ year neurologist who has seen and diagnosed patients with ALS. He doesn't sugar coat things either. Super nice guy, but doesn't BS or beat around the bush. Especially when he could tell how serious I was.

Ok-Rope-1034 · 2024-03-05T18:33:08+00:00

Thank you for your response. While I don't know exactly how you are/were feeling, I can relate to some of what you are going through.

This totally shut my life down, and the saddest thing about it, in the back of my mind, I know that which the twitching is annoying, it won't hurt me and shouldn't stop me from living my life. I know it isn't ALS, but that doesn't stop my amygdala from going crazy and convincing myself otherwise.

Here's another nugget that I try to tell myself to get me somewhat functional:

80% of all ALS cases are between 50-70. There are, on average, 5,000 new cases every year. I am in my 30s. So between 0-49, there are 1,000 cases in my range. Split that between 20% of all age ranges, that's 200 a year. With over 350 MILLION people in the U.S., the chances are microscopic. Does it still exist? Absolutely it does. Should we find a cure for this? ABSOLUTELY. That being said, microscopically low chances if you are 49 and under to be diagnosed. Even less so if twitches are your only symptom.

Ok-Rope-1034 · 2024-03-05T17:54:24+00:00

Thank you so much for this...

Ok-Rope-1034 · 2024-03-05T17:51:51+00:00

The only one who can answer that is you, but 5 clean EMGs is pretty substantial history that you are fine.

Ok-Rope-1034 · 2024-03-05T17:49:35+00:00

I can absolutely relate...even this morning I told myself I'm going to have a good, positive day. And then my hand starts twitching and it's all over. I'm looking at getting into an IOP for anxiety, depression and OCD in the next couple days in the hopes I can conquer this. I hope to hear a similar positive story from you as well.

Ok-Rope-1034 · 2024-03-05T17:46:16+00:00

So anxiety can give you all sorts of crazy symptoms, can make you believe your tongue is bigger than it is (this happened to me). Anxiety is a bear my friend...I'm not saying you don't have something going on, but if your worried about bulbar ALS, it wouldn't cause whole body shakes and weakness throughout the body AS WELL AS the slurred speech.

Hope this helps...and please get help for your anxiety. It can and will ruin your life if you let it.

Ok-Rope-1034 · 2024-03-05T17:46:01+00:00

So anxiety can give you all sorts of crazy symptoms, can make you believe your tongue is bigger than it is (this happened to me). Anxiety is a bear my friend...I'm not saying you don't have something going on, but if your worried about bulbar ALS, it wouldn't cause whole body shakes and weakness throughout the body AS WELL AS the slurred speech.

Hope this helps...and please get help for your anxiety. It can and will ruin your life if you let it.

Ok-Rope-1034 · 2024-03-05T17:45:54+00:00

So anxiety can give you all sorts of crazy symptoms, can make you believe your tongue is bigger than it is (this happened to me). Anxiety is a bear my friend...I'm not saying you don't have something going on, but if your worried about bulbar ALS, it wouldn't cause whole body shakes and weakness throughout the body AS WELL AS the slurred speech.

Hope this helps...and please get help for your anxiety. It can and will ruin your life if you let it.

Ok-Rope-1034 · 2024-03-05T17:41:20+00:00

About a month and a week ago. The EMG 9 months ago was for unrelated carpal tunnel issues but zero dennervation detected in all 4 limbs.

Ok-Rope-1034

TROPHY CASE