Confused, looking for clarity and perspective

[jonnikray]

Hello everyone, I Am brand new to this forum but I would like to take a minute to say thank you all so much for what you are doing to provide support for PALS, CALS and people like myself who are seeking knowledge and peace of mind. I cannot say that I understand all that you're going through because nobody that I know nor myself have ever experienced it but I am still forever grateful for all the effort that you all put into this site.

I have had the opportunity to read over the sticky posts, a number of threads as well as lots of information (too much if being honest) from Dr. Google. While I overall do not believe, based on all the information that I'm reading from this website, that I have ALS I am extremely confused and conflicted hoping to get some clarification. Why do so many people as well as so many medical related websites believe and suggest that twitching in a finger or foot could be early symptoms of ALS but then when I read through the post on this website it seems that it is in fact a secondary symptom in most cases?

I have, like a number of people that have visited this website, experience recently some twitching in my left index finger over the last week and a half. It has made me Hyper sensitive to anything going on in my body and I've come to realize that I have twitching in my eyelids, the arch of my left foot and my calf muscles. Additionally in my left hand and wrist I've been having some pain when rotating or using my hand. Like many, my initial fear was of course ALS and that was of course due to not knowing anything about it. That being said with all of the conflicting information out there I am still confused and firmly want to believe everything that I'm reading on this website.

I had an initial visit with a neurologist last Wednesday who did a physical office exam due to other non related medical things I had going on and he had told me at that time that he did not believe I had any symptoms suggestive of ALS, Ms, Parkinson's or any other major neurological issue. Started the day after my visit with the neurologist, I had reached out to him to let him know about the twitching and even showed him a video of what I was experiencing and he told me that it was likely nothing to be concerned about and that it would go away in time. However a couple of days later when I started to get pain and even a warm feeling in the muscle between my index finger and thumb he told me that he wanted me to make an appointment to come back in and see him. This in itself has made me a bit nervous. Add in all of the other stuff that I read from Google and other websites and I have now somewhat conflicting about whether or not this could be ALS.

So again I am sorry if my line of questioning or thoughts comes off as a waste of time but I wanted to take a moment to speak with the people that can speak most intelligently about it to get your opinion what I'm experiencing and if it could in any way be related to ALS but also to get your opinion as to why there is so much conflicting information even among medical experts when it pertains to twitching being an early sign of ALS.

I want to thank you all, even those of you who choose not to reply for taking a moment to read this over and for sharing you're much respected perspective.

 

[KarenNWendyn]

Since you’ve read the stickies and many posts here, then you probably learned that twitching is common, nonspecific, and meaningless in the absence of muscle function failure.

The fact a neurologist reassured you after examining you is a great sign.

Nothing you describe suggests ALS. It’s likely the neurologist scheduled another appointment because you’ve brought up a bunch of new symptoms and it’s more than he wants to deal with over the phone. Sometimes it’s easier for a doctor to just schedule an appointment. I’m sure he wants to take your concerns seriously and will be reassuring you. Good doctor!

Really, you have nothing to worry about in terms of ALS.

 

[lgelb]

A warm feeling/pain between the finger and thumb, as well as pain in rotating the hand, is most likely an overuse injury/ergonomic issue. It in no way suggests ALS. I agree with everything that Karen said -- you have nothing to worry about on that score, and the neuro is doing exactly what she pinpointed.

Twitching is something that most of us have at some point, and the mind makes it stronger. It can also be very much influenced by diet and hydration, which in turn often go by the wayside when we are anxious about something. So as you point out, you notice each twitch more, but you also twitch more.

As for what you cite as contradictory information, widespread twitching on its own, with no weakness or atrophy, has not been the hallmark presenting sign of ALS for anyone I can think of. I think it is fear and ignorance that leads so many writers to feature it -- a relic from the fear of witchcraft, almost, when in fact, as you are aware, clinical weakness and post-baseline atrophy are the true hallmarks.

Best,
Laurie

 

[jonnikray]

Thank you very much Igelb and Karen for your replies, I greatly appreciate you taking the time to offer a complete stranger some reassurance and piece of mind.

I do have another question that I am hoping you would be willing to shed some light on. While I understand that twitching can certainly take place with ALS and that it is often a secondary or later to take place symptom, is it normally isolated to one specific area then spreads OR when it starts does it happen wide spread on the body?

I have read it both ways on the internet; some say widespread could mean ALS and some say Locally Focused could be ALS.

Thank you so much again.

 

[lgelb]

It's a moot point. It's like asking if cotton candy is made of mud or stones. As we have said, twitching in and of itself doesn't signal ALS onset. Stop chasing ALS and live your life.

 

[jonnikray]

Understood, thank you again.