After Seeing Neuro

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WAC

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Jun 28, 2024
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Learn about ALS
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US
State
NJ
I am 38 years old, a male, started experience wide-spread fasciculations back in early June. Literally everywhere besides my face, upper arms, quads, hamstrings, calves, bottom of my feet even.Additionally I sometimes get full on twitches in my elbow that actually feels like a jolt, almost like I tapped my funny bone. I'll be honest, I do have a series of congenital cardiac issues and a few brushes with death starting when I was an infant and most recently 2.5 years ago that have left me with health anxiety that waxes and wanes. I also lost my grandmother to ALS. So naturally, I started panicking about ALS.

I went to the neuro in late August, earliest I could get an appt. He only did tests by touch and hand, no EMG or anything. Just checked for the Babinski sign, had me push against him with my head, my arms, my legs, had me jog in place, stand one legged on each leg looked me over to see if he could spot any fasciculations (he did not, they are not constant just a quick twitch ever so often). The only question he asked during the tests was, "are you definitely right handed, your right hand/arm is definitely dominant?" He told me he saw nothing to cause concern at all said he saw absolutely no signs of ALS. However, he did ask me to come back in 2 months.

So, 2 months go by, I got back at the end of October. Same thing. Same set of tests, and asked if the fasciculations are continuing (they are). Again, said he saw no cause for concern, but again, asked me to come back this time in 6 months. So I have another follow up in late April. My question is this; is it normal for a neuro to keep asking for follow ups if he sees no sign for concern. My worry is that he does see something but doesn't want to influence me so wants to see how it progresses without me knowing something is going on. Does this seem logical, or am I just working myself up?

On one hand, that suspicion seems logical to me, on the other, he sounded sincere when he said he sees no cause for concern and if he did see something, wouldn't he set me up with an EMG or something that would give more empirical data rather than just testing my strength with his own hands? Did anyone have a similar experience with their neuro, whether you did end up having ALS, or just had anxiety like I hope is the case with myself? Thank you.
 
Hi there-

Sorry you're finding yourself here with worries about ALS. I'm hoping you've read the Read Before Posting link, as it answers most questions that bring people here. Basically, twitching absent any of the telltale signs of ALS (most notably clinical weakness and pathological reflexes) means no ALS. Doctors are not in the business of lying to people. It would destroy any trust in the profession and in the doctor/patient relationship and could open them up to legal issues. Usually we get people here worried their doctor missed something, but worrying about lying is kind of next level. Asking you to return in 6 months is due diligence.

Take care
 
I'm sorry about your grandmother.

+1 for ShiftKicker's response. It never hurts to double-check that you aren't inadvertently resting on your elbow or otherwise putting pressure on it when you are doing something. That is often the source of the twitch-that-feels-like-a-shock. And in dry winter weather, it can help to put some lotion on them morning and night.

It sounds like your neuro did everything he is supposed to, but if you feel stable in 6 months, it would be kind to relinquish your neuro appointment to someone who needs it more. He may also be responding to your history of health anxiety and a desire to reassure you.
 
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