Neurologist has me concerned

[KristyJ]

Hello, I wanted to share my experience at my first Neurologist appointment and ask for advice. Thank you in advance for your help!

I am 40/F. I started having widespread muscle twitching last year. I found this forum and after reading the “Read before posting”, I was reassured and thankful for the information. I work in Healthcare and a Neurologist I work with suggested starting with my PCP for lab work. I went in for labs to check for a possible cause for the twitching. Everything was normal, but she said my magnesium was on the lower end and suggested I take supplements. She didn’t think I needed any further work up at that time. The twitching continued, but I did my best to ignore it and not let anxiety takeover.

In December I went to an Orthopedic Dr after hurting my back moving something heavy. MRI showed multiple bulging disk, but he wasn’t concerned because he said no nerves were involved and I started Physical Therapy. But he did refer me to a Neurologist because I had bilateral brisk reflexes in my knees, so I made an appointment. He said my back problem wouldn’t cause the muscle twitches, but since my reflexes were brisk, he said he wanted a Neurologist to check me to be sure. He said it was probably nothing to worry about.

I had my Neurology appointment yesterday and left upset and confused. I explained to her the muscle twitching that started in July of last year. I have no weakness or other symptoms. Before she even did an exam, she told me her first concern would be ALS and I needed an EMG. I asked her if I could have widespread muscle twitching for almost 7 months with no weakness and still have ALS. She quickly answered “Yes, everyone presents symptoms differently”. She did my neuro exam after. I had no weakness and brisk reflexes in my knees, but she said they weren’t too bad. The only reassurance she gave me was that most people with ALS are not the first ones to notice muscle twitches and that it’s usually a family member or Dr that sees them. I can feel the muscle twitches. They are widespread and come and go throughout the day. I typically only feel them at rest. I guess I’m just feeling confused after everything I have read and then she tells me something different and now of course I’m concerned. I have an appointment on Monday for the EMG. Should I be concerned? Thank you

 

[lgelb]

I wouldn't be, Kristy. I expect a reassuring test.

Honestly, I don't know why she mentioned ALS at all. Maybe she had a recent patient diagnosed.

That would be like going in with a headache and being told there was suspicion for a brain tumor. As for who sees twitches first, that's a complete non sequitur for me and lumps a number of things together.

Enjoy your week and try not to worry. Let us know how it goes.

 

[KristyJ]

Thank you for your reply and reassurance! It has helped me reduce my anxiety the past few days.

I wanted to post an update. I had my EMG and NCS this morning. The Neurologist assured me it was not ALS.

She did say my NCS was abnormal and there were some things on my EMG that were abnormal (I can’t remember the terminology she used) but she assured me several time that it is not ALS.

She said she thinks the issue could be coming from my back (which I do have multiple bulging disk in my lumbar spine) or it could be Neuropathy, but she is leaning more towards a back issue. My Orthopedic Dr said my symptoms wouldn’t be coming from my back, so I’m not sure what to think.

Also, you were spot on. After my exam, she mentioned to me that she had a patient with a recent ALS diagnosis, so I’m sure that’s why she mentioned ALS at my last appointment.

I am relieved after my appointment, but still concerned regarding the other abnormal findings. She said it will take a few days to finalize the report and will have a follow up to discuss, but I will be out of town, so I won’t have that appointment until November 20th.

Should I be assured it’s not ALS even though the EMG was abnormal? Also, she said that ALS patients almost always have normal NCS and mine was abnormal. Is that accurate?

Thank you again

 

[lgelb]

I'm sorry, did you really mean November 20 for your followup?
Yes, it's true that ALS doesn't typically cause abnormal findings on the NCS.
It's also true that when an EMG is abnormal, it's most always showing things that are not ALS. The EMG is a very extensive test for hundreds of conditions.
Whether the problem is in your spinal column and/or damaged nerves elsewhere, both are much more treatable than ALS and often PT is the first step.
I hope this reassures you that you can put ALS to bed.

 

[KristyJ]

Ooops, no, I meant February 20th.

Yes, it is reassuring! Thank you, I really appreciate your help and kindness