Concerned about possible ALS

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Dec 20, 2023
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I would greatly appreciate some feedback as I am concerned about possibly having ALS. I am a male 40 years old, about to turn 41. I have recently started to have widespread twitching everywhere on my body at different times. I have experienced some pain & stiffness with a warm to touch feel in my left upper forearm. Other random pains in my shoulders, upper back and legs, even a sore left big toe. My body just feels off for some reason.

I followed up with a visit to my primary care doctor that referred me to a neurologist. I had a clear head MRI and Xray. I had blood tests which was ok, with some high markers for inflammation. I had a lower body (both legs) EMG completed that came back normal. I was very glad to get that result, but wondered if that was enough to say I do not have this disease or will I need further testing? I am nervous and riddled with anxiety, but trying to take this all step by step. Any thoughts on this all?

I appreciate this community very much as it is a wonderful opportunity for all to learn more about the disease and hopefully generate more awareness and support to help find a cure someday soon.

Many thanks!!
It does not sound like ALS the emg backs that up. You do not mention what the neurologist said but I think your clinical exam was unremarkable?

As you appear to have been cleared neurologically I would suggest a rheumatologist consult given your pain and inflammatory markers
Hi Nikki,

Thanks for the quick reply. The neurologist said that the EMG was normal with what appeared to be benign fasciculations. She did have me schedule to return for an upper body EMG next month to test the upper extremities. That added to my concern. I have scheduled to follow up with a rheumatologist next month as well. With all that being said would you say my worry should be low or not at all? Doing my best to stay calm and level headed. Again, many thanks for your feedback.
For me, the repeat EMG is ticking boxes and a rheumatology consult is being thorough as Nikki notes.

I would not spend a moment of your precious life thinking of ALS.
Hi Everyone! Sending my love on this Christmas Day!

I do have a follow up question that I hope someone would be able to answer. For the past 2-3 days I have been experiencing some painful left and right jaw sided pain that comes and goes, possibly cramping. Is this something that has been seen before in regards to the onset of the disease if at all? I hope all is okay, but I just found it pretty odd.

Many thanks and much love!
No. I would see a dentist to get my bite checked

Merry Christmas

I am returning, because I have experienced new symptoms along with the widespread twitching. I have had some cramping in both my hands at varying times the past few days. Is this something to be concerned about?

Many thanks!!
Not in terms of ALS, in the context of everything you have said.
Hi, following up. I saw a rheumatologist and she reviewed my strength and reviewed me clinically. Ran some blood tests as well that looked okay for any deficiencies. I have my 2nd EMG of upper body set for a little over a week from now with a neurologist.
My forearm tightness and pain in left arm has come and gone, but is still present. My strength and dexterity are in tact, but this muscle tightness is bothersome. I still have widespread twitching as well. Should I be concerned heading into the 2nd EMG? The initial EMG of my lower body was reassuring originally, but I'm nervous about my upper body, in particular my left arm/forearm as I am waiting a few weeks to complete this latest EMG.

Thank you to all and sending my best to everyone in this New Year! I appreciate the feedback. Thanks!
I see no additional reason (meaning no reason at all) for concern re ALS. If the L arm thing persists, I would see an orthopedic surgeon. It's very easy for minor tears, strains and the like to cause tightness as your body tries to reduce the force of movements that would otherwise cause pain. Musculoskeletal problems don't show up on EMG.
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