Twitching in ALS Patients: Confusion

[AndyStreams]

Ok, so I saw a new neuro yesterday who specializes in ALS. She saw my twitches and said "we don't see those type of twitches in ALS patients." On one hand I wanna be like "are you sure? cuz I'm pretty sure that even though it isn't the most obvious, presenting or important symptom, I've read that als patients that get these types of twitches" but then I have to stop and think. Who the f*ck am I? I'm a guy who has read a lot of different things from a lot of different websites. This woman has spent her life studying, treating and caring for als patients. In fact when I showed her that my thenar muscle has a huge ridge in it she said "you've been doing a lot of googling haven't you?" My response: "...maybe... "She is not even concerned in the slightest about als with me. Just to recap, I have:butt-tons of twitching (obviously)dramatic weakness after exercisefoot scrapingscalloped tonguemuscle wasting in the thenar hand musclecrampingKnow what? With all of that she still doesn't even think I'm worthy of getting an EMG. Because I also:have had 2 clean EMGsI've been twitching for over 2 yearsmy strength comes back after my muscle recuperates from exertionShe thinks that my thenar wasting is due to an old neck injury and that my twitching may be caused by the radiation I received as a kid, though she says many people twitch for many different reasons; most of which are never known for sure. We are all super aware of that on this board. On a separate note, some of my ocular symptoms may have an explanation. They found numerous aortic deformities on a recent CT scan they did of my chest and neck. I should be worrying about that way more than als, but I'm trying not to stress until the doctors give me a full evaluation.Word.Andy

 

[Krackersones]

Thanks for sharing your expert info. I love having easy access to all these neuros opinions without having to make the visit myself. I do find it interesting that some neuros seems to state that they see a decent amount of unexplained twitching. I haven't been able to get a decent answer from my neuros on how much unexplained/benign over time twitching they see. They don't keep track I guess and don't want to guestimate on it. I really wish our stories would be documented somewhere. Besides the Mayo study, it doesn't appear anyone is interested in keeping records on this. I guess this website is somewhat of a substitute but the neuros are mostly unaware of it. I think knowing the numbers of people who have these symptoms and some anaysis of the form and progression they take would be worth keeping records on. Maybe with the digital medical records movement, things like this will be more easily done.

 

[cindyandco]

I just love it when you guys come back and share what your neuros have said. It is always very encouraging. I guess we're just going to have to accept the fact that we're just twitchy! Don't know why, don't know how, but one things for sure, its probably going to keep happening and we're going to keep going!