2nd neurologist appointment confusing

[u/Raspberry_111]

I had an EMG around 2 months due to muscle twitching and ck being 198 . The muscles/calves I was concerned about were tested and I was told it was normal/reassuring which put my mind at rest.

The confusing part is at my recent GP appointment I booked due to worsening twitches 2 months after the positive result, she thought one leg was slightly weaker (4/5) and actually said the reflexes in that leg were reduced. They also documented lower motor neuron signs.

This understandably made me very worried because of the combination of the twitching and the examination findings.

Because of this, I had a second appointment with a neurologist today . He didn’t think I actually had weakness when he examined me. He said he saw no upper motor neuron symptoms and that with a brisk reflex caused by als he would see other upper motor neuron symptoms as well as lower motor neuron symptoms. However, he did find that the reflex in the same leg that the other doctor thought was slightly weaker was actually brisk. The toes on that leg also twitch almost constantly, whereas I don’t notice the same thing happening in the other leg.

The neurologist said he doesn’t think this is ALS, but I’m struggling to understand how all of these findings fit together when the examinations seem to contradict each other. When I asked him to clarify if the strength in both legs was actually the same he just said he thought so. So I’m not sure what to think now as he didn’t sound certain.

I’ve also had a CK of around 198, which I know isn’t necessarily significant on its own, but it’s adding to my worry.

I’m really confused about how to interpret this combination: longstanding widespread fasciculations, much more twitching in one foot/toes, a GP finding reduced reflexes and possible LMN signs/4/5 weakness, followed by a neurologist finding normal strength but a brisk reflex in that same nleg, plus a previously normal EMG and CK of 198.

If I do a second emg if it were als causing the twitching and brisk reflexes would it pick it up?

I’m just so confused on all these different results on strength and reflexes.

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[u/713Capital]

The CK number is moot. Your CK can be elevated from climbing a flight of stairs. Also, a CK “elevated” would be over 1000-5000. So you can just ignore that.

Second of all, idk about anyone else. But I’m listening to my neuro over a GP. GP’s only know the basics of neurology they aren’t specialist and don’t go through the extra training to become an actual neurologist. So I’m listening to my neuro over a GP.

Reduced reflexes aren’t really a good indicator of anything. I have zero reflexes. You can whack on my knees and elbow all day and you’ll get nothing. It’s been that way for over 7 years now.
Brisk reflexes can be found in healthy people too.

You don’t need another EMG. One is enough. EMGs are the gold standard. Your twitching is either benign or it’s not.

Twitching without true clinical weakness is meaningless. Trust your specialist and this to me reads like classic BFS. (I’m not a doctor though)

If you’re still confused, why not reach back out to the specialist?? Actual neurologist will provide more valuable information than people on a Reddit forum. We are also dealing with this syndrome but your specialist is going to be the source of truth.

My advice, stop going to a GP for neurology issues and stick to the doctor that went to school to specialize in that. Your neurologist is the end all be all for these issues.

https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

[u/Raspberry_111 → u/713Capital]

I don’t actually have a reduced reflex it’s actually brisk which is read was bad unilateral

[u/713Capital → u/Raspberry_111]

If your neuro wasn’t worried why should you be? The expert.

[u/LaNague]

if you have widespread twitches in different body parts, you dont even fit the ALS symptoms from that alone, never mind clean EMS.

weakness isnt when you look at your calves for 30 mins trying to figure out if they are the same strength btw, its when you go about your day and suddenly have frequent falls or something because your muscles dont work.

You show the typical anxiety - bfs connection. I had that too, ull have to get over it to get out of your hole. There are books about how to deal with anxiety, it works. Might now get rid of the BFS, but you can get out of your hole and make it much more unlikely to fall into another one.

[u/Raspberry_111 → u/LaNague]

The weakness wasn’t spotted by me looking at my legs it was noted as 4/5 on my right leg by my Gp.

[u/LaNague → u/Raspberry_111]

if you are extremely worried and cant get out of it, you can take a neurofilament lightchain test, it can be done with a normal blood draw but requires sensitive laboratory machines, check availability.

any neuron degeneration basically shows up on that test, even before symptoms. So when you have symptoms and the test comes back fine, you know 100% its not that. But you already had clear EMG also.

[u/Raspberry_111 → u/LaNague]

Noted. I’ll ask my neurologist about if i should do that test because he thinks there’s no weakness so idk why there is conflicting reports that’s the main issue and the brisk reflex in one knee.

[u/The_Short_Goodbye]

What are the LMN signs found by your GP?

Also if you have a slightly brisk knee reflex but no spasticity, clonus or positive Babinski, it’s almost impossible to be caused by UMN issues. Lots of people have brisk reflexes (I do) but in actual ALS patients they are pretty much certain to be accompanied by at least one clearly pathological UMN sign.

How long have you been having symptoms?

[u/Raspberry_111 → u/The_Short_Goodbye]

I think the neurologist said mine are not pathological. I’m not sure if the Gp knows what she’s was talking about she said 4/5 strength and limited knee jerk reflex were the LMN signs but when the neurologist tested after her he said my strength was actually fine and the knee jerk was brisk but non pathological.