I have been having problems with jaw fatigue for several weeks now. My lower jaw feels like it just wants to lay on my chest most of the time. It feels very tired most of the time and if I chew too much it will always cause a migraine. (I have chronic migraine disease)

Does anyone else feel that way when having problems with their facial muscles?

I have a tentative DX of MG from the neuro-optho I went to but still don't have a definitive DX. The doc has ordered a SFEMG of the eye and facial muscles which I have scheduled for next week. I go back to see him on Sept. 30th will get an actual DX then, I guess. He did mention that even if it is not a definitive DX that he would probably go ahead and put me on Mestinon and prednisone as he feels that is what I have.

During the exam, which took hours, or at least seems like it did, he and the intern as well as the 4th year med student that he had there (this is Kansas University Med Center, a teaching hospital) all saw the same symptoms of MG and all seemed to be in agreement.

I still don't have any ptosis, thankfully, but I definitely have convergence issues as well as other stuff I can't remember now.

Well, I guess now that I have rambled, I'll get back to my original question about the jaw fatigue. Can others describe what it feels like to them? I am trying to decide if it is MG or the migraines, as I always have facial pain and discomfort with the migraine.

Thanks,
Shannon

Hey Shannon,

Oh definitly my jaw feels that way when it's fatigued. Just like any other muscle. Be careful when chewing that you don't bite your tongue as I have many times. Try resting it and putting a cool cloth on it for awhile and see if that helps. Don't eat any food that requires a lot of hard chewing like steak. Try softer food until it lets up. Let us know how it's going and good luck at the doctors. Take care and have a nice weekend.

Hugs,
Pat

Yes I too have been having jaw fatigue over last 3-weeks. I have a definite positive diagnosis for MG along with a Thymoma. Other symptons started months back. Started with double vision and problems with right eye and droopy lid off and on. After a couple of months the left eye started and right eye is better. Eyes are sore all the time and blurry sometimes. Jaw fatigues started after and general fatigue comes and goes over the entire time. I am on Mestinon 60 mg 3-4 times a day and this sometimes helps. I have been focussing on not eating steak and tough foods to chew which stinks but necessary. I think I may be starting to lose some weight (which is good) b/c I get frustrated and eat less. Hope this helps. Let me know if you have any other questions

Hi Shannon,
Jaw fatigue was one of my early symptoms for MG with mouth muscle problems, i.e. difficulties to put my lips on a glass to drink… then everything went rapidly out of control due to the prescription of a medication totally uncompatible with MG and the dx became evident 2 weeks later: bi-lateral ptosis, double vision, swallowing difficulties, blood work and EMG…
I hope your dx will be quickly clarified, one way or the other, so that the proper treatment could be installed.
Maurice.

Hey hon! Now it is time to worry just a bit! I used to have to literally push my jaw up and down in order to eat.......Have you told your dr about that? It is serious business!

Mestinon did not help with it, though it might in your case - I needed pred in order to eat - and boy did I eat @ the hosp! My neuro came in and was amazed @ how much I was wolfing down and how fast I was wolfong it down! LOL! He tld me then and there that most people on high doses of pred can (and usually do) gain around 100-150 lbs. It is not their fault. Pred just does that to them. I feel horrible about gaining 40 lbs, but I have kind of a small frame, so every pound shows on me!

Again, please call your dr IMMEDIATELY and let them know what is going on!

Big hugs!
Erin

Shannon, If you have ocular MG, then you do indeed have ptosis! It may not be noticeable to you but if the muscles around your eyes are fatigable, then they are causing ptosis to varying degrees. When the muscles don't focus the same, that is what causes double vision. And the weak muscles cause the focus problem. So, essentially, there is ptosis. Sorry to be contrary.

Did you hear about having a forehead lift to alleviate migraines? I heard it on Good Morning America a couple weeks ago. I don't have migraines anymore but I'd really like a facelift.

Annie

Thank you everyone for the replies. It helps to know if what I am feeling even makes sense. Sometimes it seems so weird that I don't even know if it is worth mentioning or worrying about.

I will be sure to let the doc know about the jaw fatigue. I'm supposed to call him if I notice any worsening of symptoms between appointments. Just had to know if this was even something to be concerned about.

I have given up chewing anything that takes much effort. Gave up gum ages ago. Just not worth it.

I agree that I probably have ptosis but it was not noticeable to the doc during the exam. I think that I have noticed it at home when I am especiallly fatigued but it is not really to the point where others notice. When I ask my hubby he just looks at me and says "possibly".

Thanks again to everyone. Your knowledge is invaluable.

Shannon

Hi Shannon!

On ptosis...I didn't think I had it b/c my eyes don't look anything like 'the pictures'. But my neuro said I did and showed me how to determine. For me it's like this...Look at your eyes in a mirror when you are winding down on Mestinon. Pay particular attention to where your eyelid naturally falls on your eye (iris or pupil) Then take your dosage and take another look at your eyes about 20 - 30 minutes later.

It was strange because without me feeling ANY difference, I went from eyelids covering all of iris and about 1/4 of pupil to eyelids just resting on the top of my iris.

For me, both my eyes are more or less equally effected - which is why no one really noticed before! Now even my hubby knows when I need a pill...and is quick to point it out!!

Hope this helps.... Sue

Shannon, What Sue said is a good way to do it. Another way is to take photos! I have taken photos of my face when I'm doing well and then after running errands. It is very scary looking! I have even lined my face up at the chin, ear lobe and hair line and then drawn lines between the two photos. It's amazing how much you can tell by doing that.

Thanks so much for the suggestion on trying to notice the ptosis. I will give it a try on the next day that I have a lot to do and know that I will be pooped at the end of the day.