Worried about Strange Facial Problem

[workingdad]

Hi Friends,

Thank you for taking the time to read my post. I'm looking for some guidance on an issue I've been having in my face. I have an appointment coming up with my doctor, but in the meantime I've become pretty anxious about it. So I was hoping someone might have some advice to possibly allay my worry while I wait to talk with my doctor.

I'm a 36 year-old working dad and otherwise healthy. I have recently over the past year lost about 30 pounds which I thought was due to improved diet and daily exercise. The result is that I feel much healthier in general but I also tend to notice changes in my body more.

Well, a couple weeks ago I began having what I can only describe as a strange sensation in my left cheek. It feels like muscle tension or soreness near the cheekbone and coming down into the jaw near the mouth. I feel it most when the mouth is resting, like a slight muscle contraction/spasm. It's not terribly painful just bothersome, a sensation as if the skin is tight on that side, and I'm constantly puffing the cheek and moving it around to relieve the sensation. I hope that makes sense. At first I thought it might just be something leftover from a nasty cold bug I had had the week prior, maybe sinus related, or perhaps connected with neck muscle tightness. But then... I began feeling my face with my hands and noticed that the left side was flatter than the right. Some google searches led me here and I've been researching ALS symptoms, which has gotten me really upset about what's going on. I now wonder whether the smaller cheek is actually muscle atrophy and whether the tightness/soreness in that area is symptomatic of ALS.

I've been constantly checking myself in the mirror and comparing the sides of my face, and I cannot find any objective sign of weakness, like drooping, loss of movement, or such like that, even though the sensation I feel makes makes me think it would be so! The only objective symptom, apart from the soreness I feel, is that the left cheek looks and feels flatter, like it is a bit dented, whereas the right cheek is chubbier and "healthier" looking. My wife saw the difference when I brought her attention to it, though neither of us know if it has always been like that or not. Again, the recent weight loss could either be a benign explanation or another worrisome symptom, depending on how you interpret it. The last year I've tried so hard to improve my health for my kids and family, and now all of a sudden I find myself thrown into a tailspin of fear over a fatal disease and the idea of not being with them anymore.

Can anyone help me out? Is that sort of flatness and soreness in one side of the face/cheek indicative of ALS? I've read so much about asymmetrical muscle loss and spasm being associated with this disease. Would it happen in the cheek this way?

Thank you so much in advance.

 

[Vincent]

ALS doesn't feel, it fails. What you have are sensory symptoms, something pals don't experience. Get it checked but I wouldn't worry about ALS.

 

[workingdad]

Thank you for the reply, Vincent.

So does this mean that whatever it is that I feel in my cheek combined with it being smaller than the other one, if these are not accompanied by any failure of the muscles in that area it points away from ALS? If it were atrophy there would necessarily be some loss of muscle function in the cheek?

 

[workingdad]

Please, if anyone in this community has experience with facial symptoms I would really appreciate your input. The worry over this is affecting my life and my family quite a bit while I wait for my appointment with my GP. It is has gone from a strange sensation in the cheek to having small spasms or twitching in the cheek and lip area, all on just the one side. Is this just my hypervigilance, too much checking my cheek and moving it around, looking for any sign of weakness? Or does ALS/MND cause symptoms like this in the face? What should I even look for? Will my GP even being able to give me answers or will I just have to wait several more months for a neurologist?

I should also mention that I found out last year that my grandmother had died of ALS, which is obviously in the back of my mind, although supposedly just having a grandmother with it doesn't make me anymore likely to get it.

Help?

 

[starente15]

Your symptoms don't sound like ALS and you've been advised to get it checked out, which you are. Until you've had a doctor examine you and determine next steps you should stay off the internet and avoid reseaching ALS which is just fueling your anxiety. I see no reason to believe that a strange sensation in your cheek could be the result of a terminal illness the same way I wouldn't jump to the conclusion that I had lung cancer because I had a cough.

 

[workingdad]

I had a very encouraging appointment with my GP/internist. He and an accompanying resident both expressed a lack of concern about any MND-type disease based on my symptoms. To my astonishment, he was not concerned at all about the twitching or the facial "dent" on my left cheek. I guess he was able to judge that it wasn't from muscle and more likely a natural anatomical asymmetry that I've noticed more after weight loss. And the twitching/tightness sensation could be from many causes most of which are benign, like a lingering virus from a cold, slightly compressed/damaged nerve, anxiety, over-use of the muscle from hypervigilance, etc.

A quick question for forum members with any experience with these neurological exams. Apart from just the regular stuff that any doctor does at an annual checkup, my doctor did what I believe he called something like a "cranial nerve exam", in which he looked inside my mouth, had me stick out my tongue, move it side-to-side, puff my cheeks, and make various facial expressions. He said based on that he would rule out any concern about ALS. Anyone here familiar with that exam? I specifically asked him if I should be seen by a neurologist and he said "No" based on that exam. Such simple tests can tell him that there is no MND concern and no need for a neurologist referral? Also, he said that my recent blood tests showed normal thyroid levels, which is another indicator. Has anyone heard of thyroid being an indicator of MND?

Thanks!

 

[Atsugi]

From everything you wrote, I see no reason to think of ALS.

You'd be surprised what a doctor can tell about a patient with very little input. My wife was a doctor and she told me that half the time she could diagnose the patient simply by watching them from the time their name was called to the time they sat down in the exam room.

By the way, ALS isn't a muscle disease, it's a disease in the brain that destroys certain nerves--the nerves that tell the muscles to move.

Stick with what your doctor says. If you are still concerned, simply get a second opinion from another doctor.

 

[ShiftKicker]

Yes. I get this exam as a standard part of any clinic visit I attend. An experienced doctor can detect a variety of issues this way.

With regards to thyroid, no. Never heard of the connection-I could be wrong, but the person to ask is a doctor. Testing thyroid is a standard part of a comprehensive health exam, as thyroid dysfunction can cause a whole truckload of surprising physical issues.

Glad your doctor's appt worked out well.

 

[workingdad]

I appreciate everybody's input. It's helped me get through the past few weeks of ridiculous worry about all this. I had a couple days where it seemed as most of my symptoms had decreased 90%-100%, and now all of a sudden the left-side facial twitching/tightness has returned today. I'm trying to decide what to do now. I feel like I need the reassurance of a neurologist, but the soonest appointment I could get with one is in July, which is too long to allow anxiety over this to burden me and my family. What should I do? Do I have any reason to worry?

I had convinced myself that the flatness/dent in the left side of my face couldn't be MND-related, since surely a noticeable difference like that would be accompanied by some disfunction of the face, right? And I was beginning to think that the facial twitching was more likely related to something benign like a virus, TMJ, teeth clenching, facial nerve compression, etc. But now something I read today has me worried. Can I ask you all a couple more questions to help me decide what to do now...

1) My primary symptom is periodic tight feeling and twitching in the left cheek/lip/jaw area. Would that sort of tightness and twitching, absent any disfunction of those muscles as far as I can tell, be reason to worry? The twitching in the left cheek is like a slight pulsing/vibrating/tugging under the skin that happens more when the face is resting.

2) I also have twitching in other parts of the body. 3 months ago (before the cheek) I began to have some twitching in the left foot, at the same time I had plantar fasciitis. But now since the facial area began twitching, I've noticed twitching in other parts of the body, the leg, thigh, butt, side, back. Sometimes they seem random--here and there. But most of the twitching in general is on the left side of my body: left foot and left cheek/face are the recurring spots. Could this all be connected? Does the fact that I have other twitching on the left side along with the left cheek mean anything? Or could that be completely benign anxiety/stress-related twitching that happens to be more on the left?

3) I have had some post-nasal drip the past couple of days, and combined with the return of the facial twitching it has heightened my worry about bulbar MND-type symptoms. Now, I have had recurrent sinus issues for the past few years: sinus infections, post-nasal drip that lasts weeks after a cold, etc. No big deal. But when I read affected's post here I really freaked out: https://www.alsforums.com/forum/peo...ughing-when-after-laying-down.html#post408815.

Is she really saying that bulbar MND symptoms can begin like this, with sinus and post-nasal drip problems? Again, I have no noticeable changes to speech or function of the facial muscles, as far as I and my family can tell. But neither did affected's loved one? If it weren't for the left-sided facial twitching, I would chalk the throat/sinus issues up to my regular sinus issues and the constant colds my school-aged kids bring home. But now I'm terrified that all these symptoms combined could be something worse.

 

[lgelb]

Dear StL,
Tillie's post mentioned that MND can cause perceived sinus issues, but it didn't make some lock-and-load connection between the two. Your normal cranial nerve function exam is a far better diagnostic screen, as bulbar dysfunction would be seen in that exam particularly.

I would follow up with an internist with an eye toward narrowing possible causes and reducing symptoms to the extent that they cause you ongoing anxiety/interfere otherwise with activity.

Best,
Laurie

 

[Atsugi]

Hey, Dad.

You wanted more input, so I went over all you wrote and thought about it, especially the sinus/cough thing.
I don't know what you've got. In fact, I'm not sure you have anything.

Don't get me wrong. Sure, you have symptoms and they are physical and they are real.
Your mind can do that.
Frankly, it all sounds like "nerves" to me. Pure stress. Some folks call it anxiety, but what you have I feel would more properly be called stress.

Laying down is a significant human event. Our bodies, esp sinuses, are always oozing stuff, but we never notice it. When we lay horizontal, though, everything changes and we feel it moving around, so we're very aware of it. Any weakness in the pallet--maybe from sleep apnea--will allow the pallet to fall down and obstruct breathing. Our lungs flop backward, and their fluids slosh backward instead of downward. The brain says "time to sleep" and kicks in some chemicals to relax our muscles, leading to the paralysis which is needed for REM sleep. So you see, simply laying down is a big hairy deal. If you pay attention to it, it can be nightmarish.

Your symptoms could happen to a person who has ALS. But it is much more likely to occur to people who don't have ALS. And you don't.

Your doctor was right to dismiss ALS and to keep you away from a neurologist. Not only is seeing a neuro going to be a waste of resources, but if you're a suggestable kind of person, it might freak out your mind to hear "see the neurologist." Your doctor knows you a whole lot better than any of us.

I don't know what you're stressing about. Maybe there has been--or is going to be--a major change in your life, and your body is bouncing around about it. Maybe it's a simple unbalance of vitamins and minerals. But ALS? Naaa.

Anyway, Laurie is the smart one. See the doc.

 

[Lkaibel]

I don't have much to add to this excellent discussion of why your symptoms look nothing like ALS, but I wanted to point out how things we worry about can work:

Tillie referenced something in another thread that happens in ALS for a number of reasons, coughing when laying down. It is a real thing and occasionally effects my Brian though he has perfect/normal lung function tests and no other bulbar type problems like speech or eating issues.

However, sinus issues from colds, allergies, or just life, asthma, etc. cause coughing when laying down. It is so common it's a medical no brainer. Many people have a chronic post nasal drip that causes coughing when laying down. If you have known sinus issues (which is not an ALS symptom) and you have this symptom it's practically a given that it's being caused by sinuses. Linking it to a terminal illness is like saying you drank a lot of water and used the restroom a lot so it's kidney disease.