Tongue Issue

[MMM]

Blessings to all that post here.
I am 67 year old female and fast forward to today.
I have had 3emgs all on limbs that were normal.
Two months ago I started with tongue issues, burning on the tip and progressively raw and aching tongue, more on the right side than left.
It is constant, not like a twitch.
My palate aches and now my gums are sore.
I saw my nuerologist and he is prescribing duloxetine which I will start today.
My question is does an emg on limbs cover mouth and tongue?
Thank you

 

[Nikki J]

Are you also having limb symptoms? Did your emg include the trapezius or sternocleidomastoid? I assume not tongue or under the chin but if the answer to either question is yes. Also your description of tongue issues doesn’t sound like bulbar als at all Who do you see and why three emgs?

 

[MMM]

Thank you for your reply.
I see the Als specialist in our local hospital.
I was having nerve pain in my hands and feet.
Now I am concerned with the way my tongue feels.
Its hard to explain, my tongue is raw and sometimes I feel nerve pain as well as rawness.
I can move my tongue easily and do not seem to be slurring my words.
However, a constant feeling of rawness.
I cant tell about atrophy.
Do I need another Emg?
My nuerologist did not mention it.
Thank you

 

[Nikki J]

Does not sound at all like ALS so no. Sounds like they were looking for peripheral neuropathy which causes nerve pain. ALs is a primarily motor disease so rather than pain it is about loss of function. Go back to your pcp and see if you should see ent or rheumatology if you have not already. Your answers are not here

 

[ShiftKicker]

Hello there-

You don't actually list anything that indicates an issue with motor nerves. This sounds like a sensory issue.

Please do make sure to read here: Read Before Posting for more information on ALS/MND and a variety of other things. It might help clarify why your neuro has not ordered another EMG.

If you are still struggling with your sensory issues, then you'd be better off asking your doctor for what your next steps should be. But pain, burning, rawness, etc, are not going to give a neuro concern about ALS- it points in another direction. Your clinical exams and health history would dictate what direction your doctor should be searching in, but it won't be ALS.

Take care

 

[MMM]

Good day, update on my symptoms.
Nerves in my tongue still burning, both sides and tip. I cant tell the difference between twitches and pain, but it hurts.
My tongue is cracking all over and mouth is dry.
I just had a full blood workup, all normal.
I had 4 emg on arms and legs, but not chin or tongue. Im taking duloxetine and carbamazepine but no help. Do I need a tongue emg?

 

[Nikki J]

For those symptoms? Again not ALS symptoms so no. Repeat suggestion of an ent

 

[MMM]

I will call my ent for an appointment. Thank you.
May I add twitching in my lips.
All very worrisome.
I need some relief from the pain.

 

[lgelb]

I think a rheumatology appointment is also worth pursuing to rule out the likes of Sjogren's.

 

[MMM]

Good Day, My PCP ran a Sjorgens test and it was negative.
Thank you for the suggestion.
I am dealing with fissures in my tongue getting worse and pain/ burning in my tongue as well as some new twitching in my lips and face.
My vitamin levels are good.
My Ent will see me sooner than my nuerologist.
I must say my nuerologist doesn't seem interested in this situation.
Is there anything else I can do for myself?
Did I miss something?
Thank You and God Bless.

 

[lgelb]

Still sounds systemic to me, which may be why the neurologist expresses less interest. When is the ENT appointment?

As for rheumatology, they can run more tests based on the exam than your GP (Sjogren's has cousins), so I would still pursue that as well.

I would also try nose gel (saline-based) on your tongue, maybe even a bit of Vaseline, and also increase room humidification, to see if either helps.

 

[MMM]

Thank you, I see the Ent on Thursday.
I just need to understand whats happening.
I never heard of someone having constant tongue pain and cracks down tongue.
I appreciate you.

 

[MMM]

I saw my Ent today. She did a full examination and decided to biopsy a spot on my tongue.
She also put me on an antibiotic as she said I have a coating on my to hue that may be an infection.?
I spoke to my nuerologist as well and he agreed with all of you that I do not need a tongue Emg.
So thats my update.
Thank you and God Bless.