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Apr 15, 2019
Learn about ALS

Hi. I have been very concerned about my recent symptoms. 2months ago, my body jerked a lot and, they felt like they were over- sensitive. I ignored those symptoms. However, the next day, my legs began to twitch. It began with the place right above my both knees twitching uncontrollably and visibly. That spread out to my butt, feet, and legs. My face, tongue, arms, and torso also twitch occasionally. But, my legs twitch the most. I went to my doctor, and my doctor noted “a bit of hyperreflexia in lower extrem . I saw that twitching+hyperreflexia means something serious. I twitch every 2-3mins. I have some questions. My blood work all came out normal. I am so sorry that I have so many questions.
1) I read that twitching alone means nothing. A little bit of brisk reflexes alone alone means nothing. Is twitching+hyperreflexia in lower limbs concerning?
2) Is als twitches visible?
3) Do als twitches stop when you move that area?
4) Are there any other diseases that cause hyperreflexia and twitching?
5) How does the tongue twitch feels like? Mine feels like someone is pricking my tongue with something from the bottom of my tongue.

Thank you so much for reading this.
1) No, not if you can still do everything.
2) There are not "ALS twitches." Muscles move many ways in ALS and also in other disorders.
3) No. You're thinking of RLS, certainly something to be screened for if you haven't.
4) Hundreds.
5) Again, there is no characteristic ALS tongue twitch.

ALS can only be diagnosed when abilities are lost. If your doctor doesn't see a loss of strength or abilities, you don't have ALS.

Thank you so much for great and helpful information.
I disagree that the twitches "cannot be ALS if you can still use everything". I have ALS with fasciculations all over...sometimes visible and sometimes not visible. It also comes and goes. I'll have it annoyingly for a week or two and then almost nothing for a couple of weeks. You don't have to lose the use of limbs or mouth to have ALS. Get it checked out.
Hello. First of all, I'm sorry because English is not my first language.

I am in a situation similar to yours. For two months, I have important fasciculations, mainly in the calves but everywhere else too (thighs, abdomen, arms, feet ...)

I had many appointments in neurology for other reasons (sudden neurological loss of hearing), I did an EMG two months ago, two MRIs, 5 neurological clinical exams, and nothing has been found, apart from sharp and diffuse reflexes.

Yet I was very anxious, persuaded to be an uncommon rare case. Google was my worst enemy, and the doctors did not really help me (one told me that I could be reassured for ALS, a second told me that the EMG should have been done after 4 weeks of symptoms, a third did not even want to look at me, a fourth told me he was 95% sure hadn't ALS ...)

In the end what allowed me to reassure myself ... is this forum! I read and re-read the sticky note, and I started to believe the fact that fasciculations and hyperreflexia without other symptoms were not a sign of ALS.

Since then the fasciculations come and go. I have not had anything for two weeks, and for three days I have many again. But I'm not stressed anymore, I know that 70% of the population has fasciculations, and that it's correlated with stress and lack of sleep.

So stop panicking, and believe what people are telling you here, you do not have ALS ... :)
Judy, my statement was that twitches in isolation, even with "hyperreflexia," which can be subjective, do not matter in and of themselves. I'm pretty familiar with the ALS literature, not to mention the cases here, and I'll stand by that statement.

Your first post in 2015, 4y before your diagnosis, revealed deficits not at all congruent with this poster has reported. For example, you reported a speech deficit + arm weakness + leg weakness, all noted by a physician. The lack thereof in the case of zmxn, who did see a physician, as do many of our visitors, is why I wrote what I did.

And the reason why you will see such comments in this section is that we are not here to scare "the worried well." As a nurse, I am sure you understand that imperative as well.

Hi. Thank you all for you guys comments.

So, just to make sure, could fasciculation and hyperreflexia come before any other symptoms?
I don’t know why my face and legs keep twitching. I twitch ever day. Doctor said it is probably not nutritional deficiency since they are all normal. Could this be something serious?Should I get an EMG? My neurologist said I should get an EMG and an MRI. Sorry for posting again.

Thank you for reading this.
Fasciculations and hyper reflexes without muscle function failure or documented weakness on an exam by a physician is not ALS. Fasciculations are common, nonspecific, and meaningless. Lots of people have hyper reflexes as a normal variant.

If you have seen a neurologist, then follow their advice. There’s not much more we can tell you. If you continue asking the same questions, we will close this thread. Please see your doctor if you have ongoing concerns.
You should follow your doctor’s advice. It does sound like your doctor is being extremely cautious so I wouldn’t waste time worrying. Look up bfs while you are waiting for your tests. You will find a LOT of people with your symptoms and that diagnosis
Strictly speaking, to answer your exact question, "could fasciculation and hyperreflexia come before any other symptoms" the answer is "yes, those two things CAN come before ALS. They also can come before chills and diarhea, which have nothing to do with ALS.

Don't go looking for deadly diseases. It is much more likely that you'll worry yourself sick, and then your worried mind will start giving you even more symptoms and you'll never feel well or even normal--you can end up a neurotic mess.

Could this be something serious? Yes., it could. It could also be nothing serious at all.
I'm not trying to be a smart-a$$, ZMXN. I can be a smart-a$$ somewhere else. LGELB posted a very knowledgeable and wise answer to you above. She and Karen and Nikki are experts with more experience in ALS than a human being should ever have.

You saw a doctor who physically could examine you. If you don't trust her, then get another doctor.
You're asking medical questions to strangers over the Internet, when you could easily see actual doctors who can test and examine you.
I do NOT recommend seeing a neurologist at this stage of your investigation. A neurologist is trained and experienced to find neuro things, and you might have a completely different problem. The PRIMARY CARE medical doctor is the one who is trained and experienced in running a health investigation. They will use the other specialties as needed.

Don't ask the same questions again, please. Our volunteers here are really busy. If they thought that you could get better advice, they would say so. Your best best is to see your PCP medical doctor and follow their lead.
Thank you so much for you guys advices. I am extremely thankful that many knowledge members answered my questions. I will keep those in mind. I am in college, and I cannot stop worrying about it! My parents said I should not get an EMG and an MRI. There is nothing I could do but to worry about my twitches and jerks. I don’t want to waste you guys’ times. So I will be stop asking questions. Thank you so much.
Hi. Sorry for posting again. Please help me. My went to my doctor and my doctor found my left hand tremor. My legs keep twitching every minute. My tongue twitched again. My blood work shows that my a/g ratio is a little higher. Other things are all normal. But doctor said it is a little higher than normal. So, he said don't worry about that blood work. My thyroid came out normal 2 months ago. So, probably not thyroid. He says if twitching persists I should go back to my neurologist. I am very scared now. My tongue twitched again. The arm that tremors keeps jerking. I am so sorry. Could MND start like this? I know people are here are very busy. Many people already answered me. But, I really think that something is seriously wrong with me. I am very sorry..
I realize you are anxious, and anxiety itself can be very disabling.

You don’t have ALS.

Please reread the sticky “read before posting” and reread through what we have already told you.

Nothing is different.

You have already seen a neurologist. Please follow their advice. Please address further concerns to your doctors.

This thread has run its course, so I will be closing it.
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