Update 6.5 Months into Twitching

[Kinabe]

My old was closed, I believe due to inactivity.

It has been close to 18 weeks since my Clinical Exam. I am still experiencing fasciculations daily, which are widespread. Nearly every area of my body has had fasciculations for at least a few days at some point in this journey. It has been 6.5 months or a little more since my first bout with fasciculation prompted my concerns.

Back 18 weeks ago, my Neurologist did not find anything that truly concerned him with regards to ALS. He did, however, say that he would;d be willing to conduct an EMG if that was something I wanted to do.

At that time, I decided against it, because I felt that it may only lead to further anxiety or stress, especially since the possibility exists there for spurious readings or false positives.

I have done very well, I believe, in not allowing fear and anxiety to take over my life regarding this. However, in the past few days, I have had a bit of a relapse into worry, as my fasciculations have seemed to increase again. They have never totally stopped, but the intensity/frequency has been higher or lower throughout these 6.5 months.

My blood tests were all fine and I have tried different lifestyle changes to no avail.

I suppose I had hoped the fasciculations would have stopped by now, and I feel that anxiety creeping up again that perhaps this is something more ominous. I am not here for mental health support, but to ask whether more experienced people here believe that an EMG after this amount of time might be useful for me to at least ease my mind about the continued fasciculations.

I guess, to be honest, I'm afraid of having one done because of the fear that something will be reveled in it.

No clinical weakness since my clinical exam 18 weeks ago or at all in the 6.5 months time.

Thank You.

 

[lgelb]

You sound like someone in search of reassurance, though you say you fear the result. If you're going to live in fear, the only two directions are counseling to get you through not knowing, or knowing.

Your statement about "spurious readings and false positives" is misleading at best. I would be hard-pressed to come up with a "false positive" EMG in the ALS world, from what we see here. And with the length of time you report (though in our eyes, benign) symptoms, a false negative should not be a concern, either.

Best,
Laurie

 

[Kinabe]

I suppose you are right... in a way I am looking for assurance, but would the EMG test, if normal, really reassure me? I guess that is something only I can answer. I did well for a long time when the Neurologist said he saw no signs of ALS. It is only because this has continued so long that I guess fear has returned.

Even if I had a clean EMG, if the fasciculations continued another 4-6 months afterwards, I can't say if I wouldn't have fear return again.

Fear sucks. Fasciculations suck. I guess I'm at a crossroads and don't know what to do.

My rational mind tells me that 6.5 months into this without clinical weakness means I should view ALS as a last possible option and not something to fear. For whatever reason, my intellect is having a hard time reassuring my emotions, at least for the past few days.

 

[affected]

But the thing is TWITCHING MEANS NOTHING. Please only your doctor can help you and I hope you get past this quickly as you have your whole life ahead. We can't keep reassuring you.

 

[Vincent]

Just to put your mind at ease, 70% of healthy people twitch at some level. Being the majority, that means twitching is part of a normal life. The place you find yourself in is much like the nasty yellow letter in your kid's backpack saying someone in your child's class has HEAD LICE. The first thing you do is start scratching your head. You check everybody in the house, no HEAD LICE. Still you scratch. Nobody on the block has HEAD LICE, scratch scratch. You are probably scratching your head just reading this. This is what you are doing with fasciculations. Remember a cough can be a dusty room or stage 4 metasticised cancer. But you don't automatically jump from a cold to end stage cancer. Get help with anxiety, you don't belong here.
Vincent

 

[KarenNWendyn]

This was the previous thread: Waiting on Neuro, scared.

It sounds like you had a very comprehensive neuro exam in March that didn’t raise any suspicion for ALS. So what it boils down to is chronic twitching + anxiety. Anxiety can make twitching worse. Twitching with a completely normal neuro exam is not ALS.

Please read through your previous thread again.

Your neurologist cleared you of ALS. You came here to get our input, and we have also given you our opinion that you don’t have ALS. Nothing has changed with the current thread.

Please keep in mind that this forum exists primarily as a support system for those who do have ALS, our caregivers, and those who have lost loved ones. We are not an anxiety or BFS forum. It is not appropriate for those who have been cleared of ALS to try to seek ongoing reassurance from people dying of ALS.

 

[Kinabe]

I guess the thing that brought me back was reading several studies and the stories of some individuals here who had a first presenting sign as widespread fasciculations.

Things like that linger in the back of my mind I guess, especially as this hasn’t resolved in over half a year now.

I read a study of a 40 year old who went to the neurologist with body wide fasciculations, was cleared, and only after a year they found clinical weakness and he was diagnosed with ALS.

I suppose truly only time can tell. There is no magical way to know if something currently benign will become something bad in the future.

I’m sorry that I have made you feel you are wasting your time. I suppose I’ll stay off the forum until/unless something changes beyond the persistent daily twitching.