jaw soreness?

[mustang22]

Hey, everyone!
I don't know what to make of my latest symtoms, so I thought I'd get a little feedback from some of my new friends on the forum. . .

For the last few months, I've had some jaw soreness especially after I've been talking or smiling for a while (part of my job!). My speech is normal, but this added "stuff" has me very upset. Here is a run-down of the associated issues:
*sore muscles in jaw/throat
*throat feels tight/like there is a lump sometimes
*mouth trembles slightly when I open it for any amount of time
*occassional "pop" or "click" in left side of throat when I swallow (only saliva)
*excess saliva (I think!) - I seem to be swallowing more than normal
*fizzy sound/feeling sometimes in throat? What's that!
*tongue twitches? (I put a ? mark on that because when I allow my tongue to completely relax in my mouth for more than 15-20 seconds the "twitches" subside
*tingling tongue
*clearing my throat a lot - feels like my normal allergic sinus stuff, but I DON'T have any drainage

These are the newest symptoms of the bunch. I'm going to an ENT this week, but I have to admit these symptoms have bothered me more than some of the previous.

Does anyone have any guidance? I've had sooooooo much blood work, 3 normal EMG's in the last almost 7 months since all of this started (last one was 2 weeks ago on my left arm which has been the source of lots of issues), and my neuromuscular specialist at the Cleveland Clinic (who is great by the way) isn't very worried.

The jaw/front neck muscles seem so tired and tight! Thanks for any input at all. . .

 

[BethU]

Mustang22 ... these don't sound like ALS symptoms to me. The llump in the throat and throat clearing are usually related to anxiety or stress, I think. At least, they are not ALS symptoms.

If your tongue doesn't twitch when resting in your mouth, that points away from ALS. Almost everybody's tongue twitches when they stick it out. Neuros look in your mouth with a flashlight to see the tongue at rest. If it is showing fasics then, it is suggestive ... but even then, benign tongue fasics are much, much more common than those connected to a disease process.

Sore muscles in your jaw are not symptomatic of ALS. Do you grind your teeth or clench muscles in your jaw? The other symptoms I've never heard of before ... certainly not in connection to ALS.

Usually bulbar onset begins with slurred speech.

 

[mustang22]

Thanks, Beth. You are always so kind and reassuring. I want you to know I think about you so much, and think you must be a wonderful person to know in person! I hope you're doing well.

Actually, my tongue does twitch at rest and laying flat, but mostly only when I first relax it. After a several seconds of "relaxing" and after some initial twitches, it calms down, but NOT completely, and not always. I don't get it, and I do worry it's connected somehow - how can we not when so much is said about tongue twitching?

My sore jaw (esp. left and right sides - by ears) is extremely frustrating. I don't think I have TMJ, and it only starts hurting when I talk! Some days, when I don't have to talk, it doesn't hurt much at all.

These two issues are really upsetting, lately. I had almost gotten used to dealing with everything. . . now this?

 

[Everlast]

Mustang22 ... these don't sound like ALS symptoms to me. The llump in the throat and throat clearing are usually related to anxiety or stress, I think. At least, they are not ALS symptoms.

If your tongue doesn't twitch when resting in your mouth, that points away from ALS. Almost everybody's tongue twitches when they stick it out. Neuros look in your mouth with a flashlight to see the tongue at rest. If it is showing fasics then, it is suggestive ... but even then, benign tongue fasics are much, much more common than those connected to a disease process.

Sore muscles in your jaw are not symptomatic of ALS. Do you grind your teeth or clench muscles in your jaw? The other symptoms I've never heard of before ... certainly not in connection to ALS.

Usually bulbar onset begins with slurred speech.

hey

I have kind of bulbar symptons but i don´t know if they are psickologyc caused... first i think i have slurred speech but not constant, sencond i think i'm having slygth drowling probs and i have jaw pain only in one side... my tongue fasciculate 3 times by day... the rest of body fasciculates 1 time in 10 minutes.. at night a little more... i have throat problems but xanax doesn t resolv it... i went to neuromuscular specialist he said all normal... muscle biopsy still normal despite of cpk 3600 2 weeks after going to gym..

I have ear pain.. cheek pain eye pain.. dry eye only one side...

my emg and ncv was made except bulbar zone... but i had already some complains in members like joint pain tremor.. muscles moving alone... etc etc


so Jaw pain is a reallty for me...

and i am still undiagnose ... despite of docs saying its not als...

i think that or cipro intox or als..

but still working and all this started agu 2008

best luck

Jonh

 

[BethU]

Thaks for your kind words, Mustang ... I appreciate it!

Jonh ... I'm just speaking from my own experience here, but a "twitch" on the tongue three times a day doesn't sound like bulbar ALS. My tongue did not actually twitch ... it quivered all over the surface incessantly, 24/7.

I was misdiagnosed at one clinical exam because the neuro said mine were not "ALS-type" fasics. He said ALS fasics are rolling movements across the surface, like waves on the ocean. Unfortunately, he was a teaching neuro and had his "class" of medical residents with him, which means that 7 or 8 new neuros are going into practice misunderstanding the basics of ALS.

In any case, ALS tongue fasics can look like mine (a quivering all over the surfact that never lets up), or can look like waves rolling across the surface (supposed to be the "classic" fasics, I guess). I'm sure there are other variations, too ... but a "twitch" that happens 3 times a day is not characteristic of ALS. Further ... slurred speech doesn't come and go. In my case (and others) it is first noticed by others.

So, it sounds to me as if your doctors are on top of things. In my experience, what you are describing are not symptoms of ALS.

Hope you get answers soon on what it might be. Good luck!

 

[Everlast]

Thaks for your kind words, Mustang ... I appreciate it!

Jonh ... I'm just speaking from my own experience here, but a "twitch" on the tongue three times a day doesn't sound like bulbar ALS. My tongue did not actually twitch ... it quivered all over the surface incessantly, 24/7.

I was misdiagnosed at one clinical exam because the neuro said mine were not "ALS-type" fasics. He said ALS fasics are rolling movements across the surface, like waves on the ocean. Unfortunately, he was a teaching neuro and had his "class" of medical residents with him, which means that 7 or 8 new neuros are going into practice misunderstanding the basics of ALS.

In any case, ALS tongue fasics can look like mine (a quivering all over the surfact that never lets up), or can look like waves rolling across the surface (supposed to be the "classic" fasics, I guess). I'm sure there are other variations, too ... but a "twitch" that happens 3 times a day is not characteristic of ALS. Further ... slurred speech doesn't come and go. In my case (and others) it is first noticed by others.

So, it sounds to me as if your doctors are on top of things. In my experience, what you are describing are not symptoms of ALS.

Hope you get answers soon on what it might be. Good luck!

yes Bethu

ti dont know what to say to you... i dont know what to say to anybody... i simple dont know... i know i was a regular person... and now i has fascics, bulbar symptons i guess...
and now i having dificults .. i go to gym.. cpk highs like hell.. lack of muscle one in chest and hands.. despite i always had small hands. so maybe they are normal.. slurred speech i'm the one that is note it but my friends also note it...so i dont know.. i have the felling of voice missing and low volume... i have kind of pression pain / feeling if i press there it hurts, in some cords that go from my troagth to the surface of esofag...

i was wondering to ask als doctor to perfome bulbar emg.. but i dont know...

 

[BethU]

Jonh ... you're in the same boat as many, many other people. It is impossible to diagnose yourself over the Internet. We are all using the same words "twitches," "aches," etc., but we could all actually be describing completely different things. Only a doctor who has seen you in person and also seen other people with similar symptoms can make a judgement call.

The best thing I can think of is to be honest and thorough with your doctor. You can certainly ask if an EMG of your tongue would be appropriate, but he has already ruled out ALS, so he may be reluctant to do what he considers unnecessary tests. Ask him what he can do to give your relief. It sounds like he has already given you other possible diagnoses. Follow through with him. You'll make yourself nuts trying to figure it out yourself online.

I hope you get the right answer soon. Take care.

 

[Everlast]

Jonh ... you're in the same boat as many, many other people. It is impossible to diagnose yourself over the Internet. We are all using the same words "twitches," "aches," etc., but we could all actually be describing completely different things. Only a doctor who has seen you in person and also seen other people with similar symptoms can make a judgement call.

The best thing I can think of is to be honest and thorough with your doctor. You can certainly ask if an EMG of your tongue would be appropriate, but he has already ruled out ALS, so he may be reluctant to do what he considers unnecessary tests. Ask him what he can do to give your relief. It sounds like he has already given you other possible diagnoses. Follow through with him. You'll make yourself nuts trying to figure it out yourself online.

I hope you get the right answer soon. Take care.

thanks Bethu yes online diagnose is wrong... you are right in everything