Could this be ALS?

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Mikey36

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Hello - First, I wanted to say that I think this forum is amazing and the dedication you all have to fight these terrible diseases is very inspiring.

I've been experiencing symptoms that have me concerned about ALS. I will lay them out in a timeline/bullet point format for ease of reading. Any help/insight/comments into whether or not this is ALS would be appreciated.

  • Week of September 18, 2021 - I began feeling unexplained weakness in my left tricep area. There was no good reason for it - so I just ignored it and carried on, hoping it would go away. The weakness was a strange feeling - it felt more fatigued than anything else, but I could still function normally and didn't notice any clinical weakness.
  • Week of October 18, 2021 - The weakness feeling began to get worse and I noticed it creeping around my elbow. It was painful while doing push-ups, etc. but not that bad still.
  • Week of October 24, 2021 - I begin to suspect a pinched nerve in my neck and schedule appointment to see a neurosurgeon. At this time, the weakness (fatigue) feeling begins in both of my legs. It is important to note that while I am feeling this "weakness," I do not notice any actual clinical weakness. I can still walk normally and do squats, calf raises if I have to.
  • November 3, 2021 - My neurosurgeon orders a cervical neck MRI which shows some bulged discs, but nothing that should be causing these symptoms. She also orders an EMG with a pain/rehabilitation doctor. I begin to really become concerned about ALS here because of the worsening symptoms in my legs and left arm. I even begin to notice some twitching in my left tricep.
  • November 5, 2021 - I do the EMG, but only on my upper body (mainly my left arm - tricep/bicep area, but they tested the right arm too). Per the EMG report, there are "no signs of motor neuron disease" and no "acute denervation" but maybe some bilateral carpal tunnel and radiculopathy with (reinnervation potentials noted). I'll be honest, I don't really know what a lot of that means, but I saw the part about no motor neuron disease, and that made me feel better...for a while. My symptoms improved a little; however, they returned a few days later - especially with the weakness/stiffness feeling in my legs. I notice twitching as well all over my legs, in the arches of my feet (especially my left foot)
  • Week of November 8, 2021 - Weakness feeling in legs and arm worsen. Walking is a bit challenging but still relatively normal. I have a follow-up appointment with my Neurosurgeon who examines my strength (normal) and reflexes (normal). She referred me to see a neurologist but my appointment is not until December 30th!!! I called around to several neurologists in my area and they are all scheduling months out.
  • Since then, my symptoms have persisted. Especially the weakness feeling and twitching in my legs and arms. Occasionally I notice weakness/stiffness in my hands as well. My symptoms do bounce around a bit - one day it will be my left leg, the next my right - some days my left tricep area feels weak, the next day I mainly feel it in my right hand as I am typing/clicking a mouse.
  • I feel like my left leg may be getting actually weak (as opposed to just "feeling" weak) and uncoordinated/clumsy, but at this point it is hard to tell because my anxiety is really bad, and it has occurred to me that some of this could be psychosomatic...but it could also be actually weak!
  • I fully admit that my anxiety is through the roof. Especially with the waiting for a neurologist appointment. I'm struggling with sleeping and eating because I am worried I have ALS.
I apologize, I know that was a lot to read. And I don't want to complain or wine, but I am very concerned about this. Could this be ALS? Thank you in advance!
 

affected

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Sorry you are going through this.
Clinical weakness is what ALS is all about, and you have been told repeatedly that you do not have this.
The clean EMG backs this up.
Please return and discuss your anxiety about this with your doctor who can help you as you move through the diagnostic process.

Read here also so you can see our offical position on all this, and why working with your doctors who can examine you is so important.

I hope you get some answers and relief soon.
 

lgelb

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With no acute denervation, waxing/waning/rotating issues as you describe, you are good to go as regards ALS. Yes, anxiety does often manifest physically and once that happens, it feeds on itself.

With issues that started on one side, I would video or get someone to watch you sleep, to look for abnormal movement that could signify pain or breathing issues that could cause you to toss/turn/burrow, and re-evaluate support surfaces like your bed, chair, sofa, and vehicle.

Best,
Laurie
 

Mikey36

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Thank you very much for taking the time to respond. I sincerely appreciate it :)
 
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