My Story

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chmartin79

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I had an extreme bout of twitches all over my body at the first of June 2022. About 4 weeks in, I was able to get into a really good neuro who specialized in neuro muscular disorders and had a clinical exam and EMG/NCV done all over my body, except chin and left leg. The results which I have attached here came back totally normal. The twitches pretty much subsided, although not entirely through the rest of June and July until I was hit with covid.

About a month after covid, I started to get twitching again in my right calf and left arm and it had progressed throughout my body at times to other spots too including my lips (which you couldnt see), but those were the hot spots so to speak along with both feet. covid also set off a disease for me that some may also be familiar with, OCD. These two things were a dangerous combo for me as through a good chunk of August and all of September the twitching came and went, my jaw for some reason right by my ears tightened, and my anxiety continued to build. My original neuro didn't see a point in retesting since I had just had a through EMG done in late June and discounted the jaw tightness as anxiety as well. Luckily my wife, who works at a prestigious university hospital in the area was able to get me an appointment with another neurologist at her university hospital and he did a very thorough clinical exam. Passed with flying colors, but I asked for another EMG for peace of mind to which he agreed to.

That same day (Oct. 3rd), my ocd/anxiety kicked into high gear because my jaw was tight and I immediately flew into the idea I have bulbar als, even though both neuros checked my cheeks, tongue, etc...I had a breakdown and quite honestly packed a bag and decided I wasn't going to let my family see me die like this and be a burden. I left my wife and three kids behind and couldn't live with the idea of als and them watching me. Luckily, after about 4 hours of walking, a friend of mine found me and got me to come back home. It was a scary night for us all. My wife immediately took me to the ER at the university hospital and I checked myself into their psychiatric unit. I explained my situation and the psychiatrists(who were also boarded in neurology) and spent the next 5 days being treated. The stay was great for my mental health as the psychiatrists(they even did their own clinical neuro exams) took my concerns seriously and ordered a neurologist consult. The neurologist and the resident that saw me during the stay also specialized in neuro muscular disorders and gave me a full exam bulbar look included and said everything looked normal. She even wrote in her notes, "does not have als. appears to have benign twitching." although none were present the time.

I went ahead and had the EMG/NCV done by the university faculty neuro and his fellow after I exited my stay on Oct. 12th. It came back as normal as well, although he did the NCV on my left and EMG on my right side which I thought was weird. I asked to have one done on my chin and he said he was going to pass on that. I thought that comment was a bit poor in taste, but it is what it is. My twitches are still around and sometimes my jaw tightness comes and goes. No issues, talking, swallowing or chewing that I can see. My thought is that if my jaw tightening started post covid in July and twitching in early August that if this was truly bulbar, I would notice something else by late October like weakness or atrophy or something would have shown up on the last emg or clinical exam? I have attached my emg results for both of them (Patient History is the most recent one and the other one was done late June) and I am not coming here to waste anyone's time. I am just here for reassurance honestly that als is out of the question with these results and symptom timeline. Thank you all for your time!

I should have also turned these files over too from the clinical exams as well this month. Thank you again all for your support.
 

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  • Patient History.pdf
    70.9 KB · Views: 38
  • ClinicalExam1.pdf
    122.1 KB · Views: 18

Nikki J

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Two of your attachments were removed because they contained your name but for anyone reading there were two normal emgs and 2 clinical notes stating normal exams one ofwhich said third opinion

no one here is going to disagree with what appear to be thorough work ups. Benign fasciculation syndrome is a thing. So is post covid syndrome
 

chmartin79

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Fort Worth
Im sorry about that...here are the documents with names redacted and thank you for your input!
 

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  • Clinical Exam1.pdf
    106.4 KB · Views: 26
  • 20220629103506-1-2.pdf
    146.9 KB · Views: 21

affected

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you are good to go from here, nothing would even begin to suggest ALS, and I'm sure you have been reassured of that already.
congrats
 
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