Facial fasics and muscle thinning

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Chel84

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First of all, I want to say that I greatly appreciate anyone’s input and time taken to respond.

My main concern is this - about 4-5 weeks ago I began noticing very fine twitches in my left jaw, which are becoming more frequent. I’m now noticing them multiple times a day. I can feel the twitching and it’s visible if you’re looking closely. I also recently noticed that my left face has a sunken in appearance compared to the right, which is new. Could this be a presenting symptom of als?

For some additional background- I have been seeing a Neurologist for about 18 months for left neck/shoulder pain with numbness/tingling in my arm. I’ve also had left sided face tingling/numbness/discomfort for the same amount of time. About a year ago I had clean emg. Although, I can’t remember all of the areas that were tested.

Fast forward to 8-10 weeks ago, I began having extreme tightness and pain in my right neck. Oddly, my left side seemed to have lost it’s typical tightness and the muscles much smaller/softer than usual. Occasional weakness is my left and right arms, but it comes and goes so nothing I was attributing to possible als symptoms. I then began having strange sensations in my left leg feeling as though it had fallen asleep and was waking up without pins and needles feeling, Also, feeling as though my feet are about to get charley horses but they never progress. These sensations also come and go, so again, nothing I was thinking could be a sign of als.

As for head a neck, I’ve been having tightness in my throat area that comes and goes. My voice sounds huskier than usual but seems to be relieved with throat clearing and also a strange sensation near my larynx that comes and goes. ENT saw nothing there and vocal cords move as they should.

Lastly, my tongue feels and looks puffier than usual with scalloping and small particles of food are getting stuck just behind the right side of my tongue, but I wouldn’t say I’m having major issues swallowing. I can move it around and get it down without difficulty. Tongue puffiness makes speaking feel strange but I don’t notice a lisp or slurring. My whole body feels uncomfortable and I’m noticing random muscle aches. At my last Neuro appt about 3 weeks ago my lower reflexes were slightly hyper bilaterally, but I’ve been in a state of anxiety.

I will add that I do have some minor cervical spine issues and the neurologist is sending me for an mri of the head in 3 weeks due to strange sensations in my left face and potentially enlarged pituitary fossa seen on chiropractic X-rays.

If anyone has any input regarding the jaw twitching and sunken in appearance, I would much appreciate it. I added the additional symptoms in case someone has experienced similar and received a different diagnosis I should be looking into.
 
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affected

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It sounds like your neurologist is investigating what is going on in the appropriate way.
Let us know how it goes but we can't give any real input, apart from what is in the stickies. Twitching means nothing. If the 'sunken appearance' is due to atrophy you would have bulbar symptoms which you don't describe at all.
Hope these next tests point to what is happening.
If you truly suspect ALS, ask to be referred to a neuromuscular specialist rather than the internet.
 
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Chel84

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Thank you for your input. I’ll see the Neurologist again next month after the MRI. I wasn’t too worried about the twitching until I saw what looked like atrophy on that side, but as you mentioned, no bulbar symptoms as far as I can tell (and I’d assume they’d be obvious). I’ll pop back in after my appt. with an update. Thanks again!
 

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My first move would be to stop any chiro care you are getting, which has the potential to make any CNS or orthopedic problem considerably worse.

People here are mostly not going to be able to contribute other CNS dx they got, since they are here bc they have ALS. What you've described could be anything from needing a new mattress/pillow to Lyme (if you haven't been tested) to a spine issue which should be amenable to treatment. ALS would be very far down on the list.

I'm sure the state of anxiety isn't helping, which suggests a possible role for counseling.

As others have said, sounds like your neuro is on the case and will refer you for a new EMG if warranted. The odds are still greatly in your favor that self-care and/or PT can greatly improve your condition.

Best,
Laurie
 
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