Bulbar Concerns Following Clean Limb EMG

Hi everyone —

I am a 32M in the U.S. The past year + has been pretty nuts for me from a health and personal standpoint. In Feb of 22 my mom unexpectedly passed, which was the beginning of a ton of grief/anxiety/etc. (I’ve always been an anxious person, but not like I am now).

In May I got Covid for the first time—prior to that I had been running half marathons at a good pace every other weekend averaging about 25 miles per week. My wife and I went on a hiking trip in July and I could barely make it out of the gate on most hikes—but I had been trying to steadily ramp up training to get back into running shape.

In August, I went for a 7-mile run at 100° Heat index and wound up with severe vertigo/derealization the next morning. I gave it about two weeks before going to the doctor, but it wasn’t going away and I had become extremely fatigued to the point where I was sleepy and unable to accomplish basic tasks outside of work. All of my tests came back clean with the exception of my thyroid which showed I have hashimoto’s disease and hypothyroidism (never had any previous health issues). My doctor said what I was experiencing likely wasn’t from the thyroid issues. I then developed really bad headaches (24/7 along with the persisting vertigo) and convinced myself I had a brain tumor. I went back to my doctor and she wanted to do a CT on my brain, so we did and it was all clear.

I then had my blood retested and it was even more elevated from a thyroid standpoint, so I started taking levo and experienced bad nausea and stomach pain as a side effect. I also started pooping blood (sorry, TMI) and had bad spells with throat congestion/regurgitation/spasms and it felt like swallowing was tough at times. I was then worried about colon cancer and/or Barrett’s esophagus, so I went to a gastro and got a colonoscopy/endoscopy which only found a hiatal hernia (that I suspect I developed in the middle of all of this because I remember bending awkwardly and feeling a horrible numb pain in the area where the HH is).

I calmed down for a bit and then in January I started experiencing extreme anxiety—unable to sleep more than 4 hours at a time. Around that time, I had a conversation with a colleague who has extreme anxiety and she told me she had to go to a neuro for muscle twitching because she was afraid she had ALS (I responded that I’ve always twitched, but had never even thought of ALS). The day after that convo, my doctor switched my thyroid medication to Armour Thyroid and cut the dosage in half. I started getting intense (sometimes feeling like a cell phone was vibrating on me) widespread twitching all over my body about a day later. I don’t know if it was from the conversation sticking in my mind or the medicine change, but this freaked me out. I googled ALS after this and started lining up other things I was having with the disease (I know, bad move).

I gave it a month and then I went to see a neurologist who did a clinical and immediately said it was severe anxiety and nothing is neurological, but said he’d do an EMG if I needed it for peace of mind. I had the EMG in three limbs, all of which twitched over the month+ (not during the EMG) and it was completely clean.

Literally the next day I wake up with the driest mouth ever and it felt strange to talk, constantly biting the back of my tongue and my tongue felt burnt. CH/SH sounds wouldn’t come out because my mouth was so dry, so I had to over-enunciate. I combatted this by constantly chewing gum, which I don’t really do much of the time, for a month straight and I had no issues speaking when gum was in my mouth (still don’t have any perceived speech problems with gum in my mouth). In between all of this, I was diagnosed with thyroid cancer and have surgery slated for May-ish.

However, my main concern is that a month+ after my clean limb EMG, I am still twitching all over and now am having a hard time saying CH/SH sounds in regular conversation without slamming my top/bottom teeth into each other—this part of my speech feels funny (but I’m the only one who notices this). I’m randomly talking and I try to hold my teeth back from hitting each other and I feel like it comes out strange—but I seem to be the only one noticing this. I’ve also always had a very slight lisp, but I feel like it’s getting worse (again, I’m the only one who notices this). Also, if I engage in a long conversation, my teeth hurt SO bad from slamming into each other and my cheeks/face get sore. I just got fitted for a night guard because I might have TMJ. I’ve gone back to my neuro twice since the speech issues I feel like I’m having started and he has said this is anxiety that is most likely stemming from my thyroid and is not neurological in the least—he did two more clinical exams and said there is nothing abnormal. I also went to the ENT about the throat issue and he said my tongue is functioning properly, the laryngoscope showed that my soft palate is shutting when I swallow, and that the congestion is most likely sinus related (it was, as I tested positive for a sinus infection two days later).

Needless to say, I am terrified that something is being missed. My biggest problem is that I am completely consumed by this fear of ALS/MND that I feel like each of these is a progressing symptom, and I’m not focusing on the thyroid cancer that I have to deal with.

Is this even a way that ALS would start (bodywide twitching followed by teeth slamming into each other when speaking feeling like I have compromised speech) or is this all health anxiety plaguing my anxious mind?

Thank you to anyone who is able to respond. My apologies for the long post.

So you've been to a neuro and had a clean EMG on your limbs as that was your main concern at the time, and now that has been definitively ruled out you've gone on to bulbar, this is a well worn path! As you probably know lot of the time HA is fitting your "symptoms" into your "diagnosis" and that is 100% what is happening here. You've convinced yourself you have ALS, so your mind is trying to find reasons to confirm this, when one gets ruled out you find something else to fit in. Unfortunately as someone who knows well - this will continue until you address the real issue.

There is an absolute ton of reassurance and likely explanations for all of your problems in the post you've written, but you are choosing not to see it. ENTs or Neuros can't help you shake this fear - so asking on here if it sounds like ALS is probably not going to accomplish much. I think there is a link between thyroid issues and anxiety, so this is definitely where I would be focusing. Talk to your doctor about treatment for anxiety, be that therapy or medication, and I think you'll be on a much better path. Best of luck with your surgery

Thank you for your quick and direct reply. Quite honestly, I think that is what I need. I am just in *shock* that anxiety can cause all of these so real-feeling symptoms. My teeth *are* hitting each other when I speak and I’ve never noticed/had that before. I just really want to ensure it is something like TMJ and nothing more sinister. Thanks again!