Tongue twitching, airway feels compressed

Momtobe

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Hi all, I have been experiencing wide-spread twitching for a little over a year (prev thread). Recently it really picked up in me face and a month ago my tongue. They’re visible at rest. Neuro did emg, didn’t do tongue but did whatever muscle is under my chin, said these were hard to do but didn’t see anything concerning. Since then I’ve developed the same feeling in my throat I’m sure others complain of. Feels like pills are stuck. My tongue feels bigger, it’s all scalloped and I can’t help but feel like it impacts the way I talk. No chewing or drinking issues. But tongue twitching is so hard to ignore and tell yourself it’s probably nothing. So nervous. Appreciate any feedback. Vitamins, viral, they’ve all been negative or normal.
 
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Hello-

Sorry this has been a worry for you for so long. A couple things- if you were exhibiting bulbar issues, your doctors would be able to detect that. As well, you would have severely compromised function by now. Bulbar issues in MND are quickly progressing and absolutely obvious. You've been concerned for over a year and lost zero function. It is time to leave ALS behind.

Please look up the term "globus". This is what you are describing.

Take care
 
Hello all,

As you know I have suffered from body-wide twitching for over a year. There isn’t a part of my not effected-soles of feet to tongue at rest. About a week ago I had a body-wide episode of rigors is the best way for me to describe it, whole body was shivering. Since then my legs have been twitching nonstop and they feel like jello, as I lay here at rest my legs feel like popcorn popping. It’s so unsettling and I’m nervous after a year I’m finally progressing to weakness. I tried to do heel walking tonight and I can do it for a few feet and then my legs and feet tire. I appreciate any feedback on this new feeling.
 
I moved your post -- please stay in this thread.

You had a recent EMG that did not support ALS. As ShiftKicker said, there is no reason to pursue ALS or to be here on an ALS forum. Please return to your PCP for evaluation and to baseline your strength. I suspect if anything there is a systemic cause involved, and since you have an infant, there can be contributing factors such as lack of sleep, poor diet, dehydration, and more. These are possibilities I would discuss with the PCP.
 
I appreciate your time and thoughts. It’s just so scary when I’ve had this twitching (including visible tongue) for a year and all of a sudden I have this weakness feeling keeping me awake at night. My limbs feel like jello. All labs have come back normal except an elevated PtH with normal calcium. I’m sure I’m anxious because I have little kids, I’ve just never felt weakness until this last week.
 
Hi there-

It's really unfortunate that the fear about having ALS is still troubling you enough to keep returning to this forum despite a clean EMG and clinical exam and being provided very clear reasons why ALS is not the issue. It is time to address your anxiety while you also work with your doctor to figure out what the issue might be. This is not a dismissal of your symptoms, it is a recommendation you address the thing that is causing you the most distress currently.

Everyone deserves real support, especially if there is lots of stress in their life. Having someone professional to speak to about your concerns and who can provide you tools to manage stress is important- there are people out there definitely more qualified than folk on a forum that is for a disease you don't have. Please consider speaking with a counselor or therapist.

I recommend you remove this forum from the places you visit online, as it's not going to be helpful or healthy for you. Please take care of yourself and really really hope you can leave your anxiety about ALS behind.
 
Thank you all so much. I know it can seem like we’re not receiving any sort of reassurance, but we are- at least I am. Saw my neurologist today and he is sending me to Emory ALS clinic - will update when i have an appointment.
 
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