Burning muscles even in tongue?

[Jellyfish]

I was reading some old threads of undiagnosed people who had burning muscles after slight use, like brushing hair or holding cell phones. My tongue burns when eating a sandwich like I have been lifting weights with it!
Not a burning as if it were hot. My muscles burn as if they were extremely over worked. I noticed a few diagnosed ALS peeps said they didn't experience this but I can't walk up 2 steps without feeling it. I get the lump in throat feeling and under my tongue and neck area below my tongue, it burns when used. I can't even touch my back teeth without the burning feeling in my tongue.
It's been happening since the weakness and slurred speach started a year ago. MRI is good, myasthenia gravis tests all normal, autoimmune shows positive. It was also positive 30 years ago when they said I had RA.
Single fiber test scheduled for next month. Just wondering if this overworked burning feeling is experienced by anyone who has been diagnosed with ALS.
I barely move and I feel like I have do e a total body workout with burning so bad I have to stop and rest. Then muscles feel so heavy and weak.
From an old post I read, a few said they don't experience the feeling so I thought I'd ask in this forum.
It's really hard to feel all this strange stuff for a year and still be clueless.
Thanks

 

[planningguy]

Jellyfish,

I do not have ALS, but just wanted to comment that with your RA results and other comments about auto-immune disorders, that is where I would focus my attention. Are your problems just with your tongue? MG can be pretty difficult to detect, and some suffers don't come up positive in blood testing. That's why its good that you're having a single fiber EMG done as well.

Are you seeing a rheumatologist? If so, what have their thoughts been?

Best wishes,

Robert

 

[Jellyfish]

The rhuematologist said I was fine and the neurologist said she suspects Myasthenia Gravis. All of my muscles are involved. I have twitches, have to hold my head up during dinner. When we go out to eat I must lean on the table. My back burns at a booth because I am sitting too far from the table. My soft pallet is really weak. If I blow my nose, air bursts out through my mouth like I can't close that seal with my pallet. It also collapses making it hard to breath through my mouth so i must breathe through my nose.

 

[trfogey]

If you have had these problems for over a year and they are not significantly worse now, then your problems probably aren't caused by ALS. By significantly worse, I mean unintelligible speech, inability to swallow, and choking episodes (especially with thin liquids).

 

[Jellyfish]

The weak soft pallet thing is new, within the last 3 months. I choke on my spit at night, yuck!
But the tongue weakness and the rest of my body is pretty much the same. I have a new sensation of someone tapping on my tongue or bubbles popping or those wired pop rock candies popping on my tongue. That started about a week ago. Certain letters are hard to say but the slurring has been about the same. The lump in throat thing went away with Mestinon(mesds my Neuro gave as a test for Myasthenia Gravis) but the lump thing is coming back after 2 months of Mestinon. I am better with rest. Even 15 minutes helps me hold my head straight up again. Just seems that when I use muscles, they burn, get tired and then after rest they feel better, they never feel normal but they feel more strong. Thats a whole other issue, strength. I can move heavy furnitur but then I'm done for the day. My muscles "seem" to be strong but they tire fast. But then I read on here where people with ALS are running miles a day. I can't run one step. I miss jogging out to the car or hopping down the stairs. Now I hang on to the rail and pull myself up the stairs with both arms. Is that weakness?
I can't climb them at all if I've done any walking, like from the car to the church and then try to go up stairs.

 

[hopingforcure]

Not a medical opinion. But it sure sounds like MG to me.. A lot like it..

 

[planningguy]

Significant improvement with rest is a good sign. Although some of the PALS on the board still lead active lives, once the weakness strikes a part of the body it never goes away.

If your neuro thinks it might be MG, take comfort in that it is a manageable disease.

Hope you find out more soon.

Robert