No fasciculations

[ericb]

Is it possible to have ALS by having arm & leg weakness, muscle aches in both thighs & no fasciculations for 11 months? My Neurologist is confused and doesn’t really know how to diagnosis my situation.
Thank You very much

 

[Nikki J]

Not everyone with ALS twitches. the diagnosis of ALS is based on an emg in a specific pattern with widespread abnormalities , clinical exam showing clinical weakness and upper motor motor neuron signs and tests to rule out mimics

your profile says you were diagnosed with ALS but you say your neurologist doesn’t know how to diagnose you. If you would clarify and share more people can answer better

 

[ericb]

Thank You
I really appreciate your valuable information
I had a tele med appointment with a Dr from NYC that diagnosed me with ALS. I eventually got an appointment to visit a Neurologist in person and he doesn’t know what I have. He claims it’s not ALS.

 

[Bestfriends14]

Hi there,

I'm confused how a doctor diagnosed you via telemed. Was it a neuromuscular specialist? Was the diagnosis based on an EMG and an in person medical exam? Sorry, your information is very, very sparse. Your symptoms don't say ALS at all, so I'm a bit perplexed at a diagnosis over a zoom call. Do you have an EMG report with a diagnosis?

 

[lgelb]

I removed your "diagnosis date" as it seems suspect, especially without an EMG and an in-person exam. We will not be able to connect your vague, common symptoms with ALS, without some clinical evidence to that effect. And if that's all there is so far, you shouldn't, either.

You would want a second opinion anyway, even if you were formally diagnosed. Where are you being referred? Have you been to Alaska Neurology?

Best,
Laurie

 

[ericb]

Thank you for communicating with me. The doctor was referred by Dr Terry Wahls. He is a very well known Neurologist, who became my friend. The Neurologist that I am seeing in Alaska is from Alaska Neurology- he is seeing me in another town. He currently has me diagnosed with CIDP & I’ve been doing IV/IG infusions for 3 months now. Every three weeks. Not helping me at all. He did do a EMG. Only on my two legs, knees down. My symptoms are continuous muscle aches on my right thigh & right arm. It also exist on my left side, but bearable. I haven’t lost strength but my right side tires quickly. This has been since May 2020. I also have slight complications with swallowing.
Thank you very much for any input

 

[ericb]

 

[lgelb]

Don't see any EMG findings, only NCV, which by virtue of multiple abnormalities, argues against ALS. Can you post the EMG findings?

 

[ericb]

Is an EMG when the poke the muscles with a needle & listen for noise ?
If so... that portion was normal
Thank you very much for replying to my questions.

 

[Bestfriends14]

Congrats on not having ALS. Yay!

Good luck to you.

 

[Nikki J]

As my friends noted above a normal emg and an abnormal ncs say no ALS. Numbness noted in your report also argues against ALS. I do see you had covid. If it came before your symptoms it may be causing this. If it came after it may be making it worse. There are multiple reports of neurologic issues post covid. An example I recently heard about - a person who got covid last spring who became so disabled their spouse had to bathe them

whatever this is it isn’t ALS which is very good news

 

[ericb]

Thank you very much