Twitching as the first sign...

[chmartin79]

I have posted on here before about three months ago and I have had two clean EMGs in the last ten months and clean clinical exams. Been cleared by three neurologists (all three neuromuscular specialists and two who are well known ALS faculty at a local University hospital). I still have muscle twitching and what I don't know if they are muscle pains or cramps in my calves.
I have a couple of questions that maybe someone with more experience can help me with. I read the post its on this forum and it says twitching is seldom if ever the first symptom, but I have noticed over the months of reading through these forums that it seems twitching is the first symptom people have? I am trying to reconcile that fact or maybe I am just missing something. Also, regarding the muscle cramps people are experiencing, does the muscle cramp in the sense of it clinching/freezing up like you see in sports or is it just a muscle pain you get?
Any information would be helpful and I can't say enough how much I appreciate this forum.

 

[ShiftKicker]

For background: My Story

Hello, and sorry you find yourself back here again, worried about ALS. If you are not able to believe the doctors and multiple EMG tests you've had, it's highly doubtful you will believe the folk here who have tried to reassure you. It's very likely that the more you research, read and try to get specific details from people, the stronger your anxiety will get. It's really important you work with your doctors to help you with your symptoms, as an ALS forum is not a healthy place for you to be.

I'll quote from the "Read Before" thread section on twitching-

Other “Symptoms”—Twitching
If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes. If you have twitching without clinical weakness, atrophy or an abnormal neurological exam, your twitching is probably not from ALS, which is a very, very rare disease..

This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."

Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately. Try reddit muscle twitch or facebook bfs recovery group

Also, see Twitching, false alarm

 

[KimT]

Even if someone notices twitching as the first "symptom" that means that an EMG would show denervation in the muscle that is twitching, if it's ALS. Same with cramps.

You have nothing to worry about.

 

[lgelb]

Yes, we see a lot of twitchers here. Unless something else is obviously wrong in short order thereafter, they don't have ALS, particularly with multiple clean EMGs. Many, many people have twitching and/or cramps.

 

[chmartin79]

I actually do take a lot of stock into what people say on here. I mean, they and we are the ones that live it every day. I appreciate the comments above, I really do and probably to the ire of doctors, I just put more stock into those that are living through it than them.
As for cramps, I guess my only question is what do they feel like? I have what I consider muscle pain in my arms and calves sometimes, but the muscle doesn't freeze/move up like you see in "cramps" I would think? So, I am not very clear on that part of the equation when it comes to my body and am just asking for clarification. I appreciate again all the words, I really do and again contrary to the above post, I do take what people say on here serious. Hope yall have a good day.

 

[Nikki J]

A cramp is not sore muscles. It is the sudden knotting of a muscles that is acutely painful until it relaxes. Almost everyone has had a calf cramp commonly called a charlie horse and they are not ALS specific at all even in other muscles