Tongue symptoms

[Tonguefear]

Hello and thank you for taking a moment to read my concerns.

I am aware that bulbar onset is rare . Also I am 37 year old female, so I believe that makes it even more rare .

But, a few months ago quivering in my chin and jaw began. When I smile you can see it shaking - not all the time but most .

Twitching in my right jaw and side of face . And stabbing / burning feeling in sections of my tongue / twitching . Sometimes feels like twitching of my soft palate too.
My throat often twitches - but my doctor said that is GERD- my voice is hoarser and weaker . Occasionally it is like I forget how to swollen . More frequently these last couple weeks .

My biggest concern now is tongue wasting / atrophy . My tongue has a ton of movement - can roll it , stick it out, bend it etc . BUT when I stick it out flat, it is no longer symmetrical . One side is thicker and the centre line is crooked . Has a curve in it and the same side it wrinkled .

Still movement -like normal - but no long symmetrical and some wrinkles and indents / larger more muscular locations compared to others .

Does this sound like the start of atrophy ? Could this be bulbar onset ? Or does this sound like anxiety / something else .


As per the rules I will not post a tongue pic!

 

[lgelb]

Has your PCP observed this asymmetry? Is GERD being treated?

If you or your PCP is concerned, an ENT visit is always an option. But no, I would not suspect ALS. I would, however, take a hard look at where/how/when you're sleeping.

 

[Tonguefear]

I have not showed my pcp . I have showed my family and they do notice it but say my tongue can do things other people can't in terms of movement - they can't see the concern .

I have sleep apnea , and sleep with a mask on, I also know I am anxious human to begin with .

The length of tongue is symmetrical but the light down the centre dips and curves and one side is fatter . A hoarses , scratchier voice has been noticed .

Does this info help clarify, I'm curious why you asked about sleep!

 

[lgelb]

Why not show your PCP, likely for some reassurance?
CPAP or BiPAP can cause a scratchy voice and even burning tongue if pressures are too high or your humidifier is not set properly or the mask is not the best for you. These are all worth checking, as is your AHI since the reason I asked about sleep is that twitching near the lip is pretty classic for not getting enough refreshing sleep and sometimes dehydration.

 

[Tonguefear]

Sadly my pcp retired last year , and I have yet to locate a new one .

Since my previously message - my entire one side of my face seems to be in spasm- twitching. Eye and cheek. That side of my face quivers when I smile even. That same side the shoulder twitches occasionally too and my jaw . My throat as well .

It is giving me severe anxiety and I am not sure if this is bulbar ALS and what my next steps should be without a doctor? Emerg?
Does this sound like the start for others ?

 

[ShiftKicker]

In Ontario you have access to walk-in clinics and/or nurse practitioners. You also have a phone in health line- call 811 to speak with someone who can advise you about where to find appropriate care. You can also access the same via chat at OntarioHealth811. Emergency departments are for immediate emergencies, and while this must be stressful for you, it is not an emergency.

 

[Nikki J]

Listen to shiftkicker. She is 100% correct. Do not use the emergency room for a substitute for primary care. You would use valuable resources and they still wouldn’t give you the care you need

 

[Tonguefear]

Thank you both for the feedback . I will take that advice and try and get seen at a walk in clinic for the twitching and tongue .

Can you please let me know from your perspectives, does this sounds like the start of bulbar ALS?

 

[Nikki J]

Not to me

 

[lgelb]

Nope. Since your tongue moves normally, again, I would start with your CPAP setup. Even a mask that is dirty or not fitting properly can contribute to what you are describing face-wise, and what your tongue looks like really is not important in itself.

 

[Bestfriends14]

Nope, not to me. Not even in the slightest

 

[lisa g]

Doesn't sound like it to me and I have Bulbar involvement.