Concern for bulbar onset

[IdoneDeClare]

First, I want to say that I can only imagine how much fun it is dealing with an influx of people who came to Doctor Google for medical advice and instead were..idk..terrified into coming here. It likely gets repetitive, but honestly? Thank you for even having the compassion to answer the questions we come with.
I did read the pinned post regarding tongue fasciculations, and I suppose my librarian past has me going "But..can you cite that? Where did he SAY that updated part?"

I am a 42 year old woman who, as far as I know (I only happened to notice when I stuck my tongue out to show someone what iron deficiency paleness looks like, otherwise I don't...inspect it), has had tongue fasc for about a week. They happen when my tongue is extended and at rest in my mouth, though less so when it's at rest. I have a documented history of bruxism to the point of cracking teeth, and I DO have a history of facial tingling due to TMJ stuff.
I do have chronic sinus issues that deal with postnasal drip, and GERD, so I have a multi year history of throat clearing/coughing after eating and drinking and I don't THINK that would be a factor in this. I have asked and no one seems to feel I've got any slurring.

I don't experience foot drop (despite being fat, I can walk on toes and heels), my hand dexterity seems okay? I can still hit 120 wpm when typing. I also have health anxiety, though it is typically cardiac related.

There's been a brain MRI done within the last 2 months due to TMJ causing numbness of the eye socket (resolved) which was normal for a 42 year old. I have osteophytes of the C5C6 that approach but do not touch the cord. I am, currently, uh...rather severely iron deficient, but nothing I can find indicates iron deficiency can lead to tongue quivering/fascs.

Which is to say..I have tongue fascs. I have seen my doctor, who said, "I mean, it looks weird? But I swear mine has done that..and I'm fine. It's probably nothing? I know it will bug you though, so I'll send you to a neuro just in case."

I have a call to said Neuro waiting to get an appointment.

I am not, by any means, trying to make light of anyone's struggle. I have provided care for a terminal loved one, and I've watched the toll a terminal diagnosis has taken on someone. I am just, for lack of any better words, terrified to my absolute soul that this is motor neuron disease. I CAN feel some of the larger twitches on the top of my tongue near the tip, but the small quivering around the outside? No.

Does anyone have experience or feel it's an actual point where I would need to be concerned? I am not going to go to the neuro to demand any specific testing, only that my doctor hopes that perhaps he can/will reaffirm her belief that it's just something odd? But it's definitely not something I've had before recently.

I truly appreciate your insight, and I promise that I will not dismiss it.

 

[lgelb]

Not knowing why you are iron-deficient, many of its common correlates, including anemia, B12, vit D, Mg, Ca, and other deficiencies/imbalances can lead to unappreciated pain/nerve root irritation/fascics. There is dry mouth, dehydration, allergies, all the basic stuff. Depending on what is happening in sleep, how good your night guard is, etc., TMJ could certainly play a role.

In short, I wouldn't hit the panic button -- the neuro will recommend any tests s/he feels warranted by the exam, which I would certainly not prejudge.

 

[affected]

As the post you read first says - twitching means nothing.
That goes for the tongue too. I think it says that.

The fact you are then looking to see if you already have symptoms in hands and feet should tell you how clearly this is anxiety. Bulbar onset means it starts in the bulbar area. Yet you are looking for onset everywhere.

Let us know what the neuro says. There is no reason to even begin to think ALS. Your choice on what you do with that knowledge.

 

[IdoneDeClare]

Thank you. <3

The iron deficiency is being attributed to taking PPIs (Prilosec then Nexium for the last 8 years (no gallbladder caused severe GERD so PPIs). My Ferritin was 5, and my iron is..29. My doctor was incredibly unamused when I finally said, "hey so..any chance we could check my iron levels? idk, a friend mentioned maybe it would be worth doing based on my nails being weird looking now, and being cold, and being tired, and.." When it came back it came back more of a "oh GOD. Okay, let's get you set up for infusions" which I'm waiting for. I know persistent iron deficiency can lead to burning mouth syndrome, which is something I deal with. My Vitamin D was barely low at 30L, which is below normal but not deficient per my doc.

As for a night guard, unfortunately I live in America which means even with my insurance that was going to set me back a cool 900, which I couldn't do, so I end up using form to teeth OTC options.

I will say that on reflection, about three weeks ago I was going "WHY do I feel my tongue twitching in the same spot over and over?!" and I don't know if this is just a furthering of that particular thing, if that makes sense? With that side, I can almost wonder if a nerve irritation happened and then expanded.

I genuinely appreciate the thoughtful response. I know it's not fun to get a bunch of panicked folks in here asking, and I know I went, "stupid.. but like..if I DON'T ask..." before I submitted my question. It's only been a short period of this particular situation (as far as I know, again, not a tongue inspector until now!) and as someone who tends to catastrophize things, I have absolutely had a fall to the floor weeping softly style breakdown about once a day. Reading the note about the ALS specialist clarifying it meant in his patient demographic (meaning als patients) helped..some? But I DID go "okay but..where was that published? I want to read that! MY BRAIN NEEDS IT!" as things like Stanford still list new onset tongue fasc as concerning for ALS. The Neuro should be calling me tomorrow to get me scheduled, and it will be a definite struggle to remind myself that it won't change anything to just assume he's going to look in and go "oh, yeah, RIP I guess"

All of you here are an absolute wealth of knowledge and I truly hope people are respectful and appreciate what you're doing without charging a single copay.

 

[Nikki J]

If I remember correctly the original comment that set off panic in the anxious twitching community was in a talk -not written by him but repeated over and over on the internet The refutation came from an email from him to someone who reached out for clarification. They shared the email. This all happened years ago None of it was published in a journal- not the original comment or his explanation. The professor is Martin Turner. You can certainly try to search for all this online but I assure you we did not fabricate it.

this is what I found on Stanford’s clinic site
The first sign of ALS is often weakness in one leg, one hand, the face, or the tongue. The weakness slowly spreads to both arms and both legs. This happens because as the motor neurons slowly die, they stop sending signals to the muscles. So the muscles don't have anything telling them to move. Over time, with no signals from the motor neurons telling the muscles to move, the muscles get weaker and smaller.

weakness ( clinical weakness) is the hallmark of ALS

 

[affected]

Let us know after your clinical exam.
But whatever your brain needs I feel we have given all the input we can at this point.
Twitching alone means nothing and that is from our knowledge and experience.

All the best.

 

[IdoneDeClare]

I genuinely appreciate all of the candid responses, I do.
I know that health anxiety folks can get tiring, and I promise we don't love it any more than anyone else.

I am also going to assume that ALS symptoms don't often get better/go away..which I will admit my tongue twitching has done. I still sometimes feel like my throat is "tight", but I have pretty severe GERD and sinus drainage AND it's a feeling I've had before over the last many years that has gone away

I have an April 3 appointment with a neuro that I intend to keep only to evaluate my osteophytes on my c-spine, but I want to say this..
Thank you. Thank you for pushing me to look at this from the direction of health anxiety. Thank you for reminding me that catastrophizing won't help. Thank you for simply being willing to answer and share.
I will say the reason I listed other issues that were non-bulbar onset is because I'd seen people asked "well do you have any OTHER symptoms?" and I wanted to share immediately what I did NOT seem to have. The only issue appeared to be the tongue twitching. I had to see a doc for something else and he looked at my tongue and went "...it..looks like a normal tongue? What am I looking at? The little flickers of movement off and on in the middle? That happens? Tongues can't be held perfectly still even at rest. Those aren't fasciculations. They're just small muscle adjustments"

This community is one that is forged in a heartbreaking diagnosis, but somehow has still found the time to exhibit kindness.*

*with the understanding that kindness is not always warmth or even patience. It's just..being honest and forthright.

 

[affected]

Sounds like you are making great progress on your mental health.
Please do come back after April 3 and fill us in.