Could it be?

[alsfearman]

Hi. I had a clean EMG on my right arm and leg in early-February, but it didn't make me feel any better. That one was done by a decent neuro.

My neuro, after I had a perfect clinical test, wanted to do an EMG for something completely unrelated to ALS and the twitching (he didn't even know I feared ALS at this time). He specializes in neuromuscular diseases.

He did nerve conduction on all 4 limbs, and did the needle portion of the EMG in about 20 spots overall on my legs, arms, back, neck, everywhere (I think 22 total)

This was done yesterday.

After expressing my concerns, he said I most definitely don't have ALS. He said all my nerves are perfect and that isn't something I should think about at all.

The next day, I became really fixated on my tongue. It feels like it isn't ever in the right place. I'm always pushing it against the roof of my mouth and it is pretty sore because I can't stop (have been jaw clenching, too, maybe that is an anxiety thing). Since I started doing this, I feel like I can't talk right.

Despite how I feel, nobody else has said anything. I've gone so far as to pretty much constantly bother my friends asking if they still think I'm talking normal. They say yes, but it seems impossibile!

If an EMG was done on back and neck and shoulders, would that pick up bulbar issues?

Speech issues wouldn't come and go in ALS right? I'm hoping it'll go away when I am able to stop being so hyperaware of my tongue and always tensing it, but that hasn't happened so far.

I know I should have asked this to my neuro, but I feel so dumb asking him these questions. I guess I shouldn't though since he is my doctor

Also, I am a 25 year old male

Thank you

edit: how do you PM on this website? someone else's timeline matches up so closely with mine, I'd like to talk with him if it is possible :3

 

[Clearwater AL]

As I wrote in a previous reply if you are now concerned with tongue issues you can request/ask that your Neuro do an EMG on your tongue and jaw muscles.

But... as you wrote above,

"My neuro, after I had a perfect clinical test, wanted to do an EMG for something completely unrelated to ALS and the twitching (he didn't even know I feared ALS at this time." ??

To that, maybe one of the more knowledgeable members may relate to an EMG being done to investigate "twitches" unrelated to ALS.

Hopefully your Neuro can help with your tongue concerns

 

[KimT]

You have been reassured by a neurologist that you do not have ALS or anything like it! That is wonderful news.

Please try to stay off this site and live your life. If you are having any other symptoms, see your primary care doctor and go from there.

Please do not try to contact others on this forum. Work with your doctor.

 

[alsfearman]

As I wrote in a previous reply if you are now concerned with tongue issues you can request/ask that your Neuro do an EMG on your tongue and jaw muscles.

But... as you wrote above,

"My neuro, after I had a perfect clinical test, wanted to do an EMG for something completely unrelated to ALS and the twitching (he didn't even know I feared ALS at this time." ??

To that, maybe one of the more knowledgeable members may relate to an EMG being done to investigate "twitches" unrelated to ALS.

Hopefully your Neuro can help with your tongue concerns

I don't know what exactly he was looking for, but after he got my blood work, my creatine kinase was very high (20x higher than the normal range), so he wanted to check to see if. I'm not sure what. But after talking more about what causes high CK levels with him, we are both confident that it is due to an exercise-related injury that I have.

 

[alsfearman]

Also, for anyone reading, it mainly seems that my tongue FEELS weird rather than actually doing anything weird. I often see that this is a disease of "failing not feeling". Would the fact that only I seem to notice it, and it just feels off, point away from anything sinister?

 

[alsfearman]

I guess I could summarize my concerns with: if he did the needle portion in my back and neck, would that detect bulbar abnormalities? I know some people talk about having it done directly in chin or tongue and he did not do that.

 

[Nikki J]

I don't know exactly what muscles you had done but there are muscles in those places that are used to detect bulbar. It is the doctor's preference which one they use but they are all accepted methods.

Bottom line you have been cleared by your neurologist. You are not helping yourself here, rather you are fueling your worry. Please follow up with your doctor with any questions and block this site.