Progression of Symptoms

[NoNoNo2022]

Hello,

I posted here about 4 months ago and I’m returning because it seems that my symptoms are progressing.

Since I last posted I had an EMG test and was tested on three limbs…my left arm, left leg, and right leg. They found benign fasciculations on my left hand and found L5 radiculapathy effecting my left foot. The doctor ended up telling me that I did not have ALS that day lol I found it funny she said I didn’t have it that day.

Since then I’ve started to fasciculate on my face and develop what I think is weakness in my face. My face feels like it’s contorting and cramping and my tongue now feels slow and I’ve had trouble speaking the past two days. Just feels difficult to get my words out. I also have throat problems like globus sensation but I’ve had since the beginning of 2021. On my most recent clinical exam I also developed bilateral Hoffman reflexes which I used to not have.

I’m waiting to hear back from my neurologist but I guess the reason why I’m posting is because I’m wondering if this sounds like bulbar onset or just the continuation of possible disease? I haven’t developed weakness in the rest of my body but the speaking problems and the rest of my facial symptoms are concerning to me. Should I get another EMG? I know the chances of having ALS when I’m 27 is slim but I’m having some troubling neurological problems.

Thank you for taking the time to read my post.

 

[lgelb]

"It" sounds like neither bulbar onset or any "continuation" of, well, anything. If no one but you hears a problem with your speech, you don't have one. Anxiety can easily cause the kind of dry mouth and throat that seems like a speech problem, as well as perceived facial stiffness, vs. the clinical weakness that is apparent to others as well.

If/when others detect speech problems, your PCP can refer you to a speech therapist for evaluation. I see no reason to worry about ALS or request another EMG. The EMG of someone with ALS shows multiple abnormalities, not normal findings across the board apart from a lumbar disk problem. I would consider seeing a counselor to discuss the possibility of health anxiety contributing to these issues.

 

[NoNoNo2022]

Thank you for the quick response. I’ll discuss with my neurologist. I was just hoping to get outside input on what’s going on with me. I appreciate the insight.

 

[Bestfriends14]

Outside input as to what is on going on with you is exactly what your doc is for. Because this is a forum for ALS, anything other than that, we don't speculate on. Thankfully you do not evidence ALS whatsoever.

Take good care.

 

[affected]

Just like last time you came, we explained that only a doctor can work this out with you.
You don't have ALS symptoms, so that's all we can say.
All the best.

 

[NoNoNo2022]

Hello I went to the ALS center and I’m still concerned. They said everything seemed fine but would like to do another EMG of my tongue which is scheduled for the end of October but I’m on the cancellation list.

I’ve been ready about Second Opinions story about how she was recently diagnosed with Progressive Bulbar Palsy and it has me very worried because my symptoms are very similar to hers. Mine started with burning mouth and fasciculation all over face and tongue and pain in my jaw. I’m not slurring my speech yet but it is very difficult to speak and my voice gets more hoarse with use. I can tell it’s more difficult to say words that start with L especially.

I know no one will be able to help me but I’m just documenting this for anyone else that comes and is looking for help.

 

[affected]

OK, documented, but this is not your personal blog, and only diagnostic results will really help others.
Stating you found someone else like you that did have ALS or PBP doesn't help anyone, it just fans the flame of fears that are unfounded.

It sounds like they are doing the tongue EMG because you are being so persistent. They don't order EMG for people who have a normal clinical exam unless the person is pushing that something must be wrong. Please believe the results and let us know once you have them to upload.

All the best in the meantime.

 

[Clearwater AL]

NoNoNo... of course if you push for an EMG they will go along.

They are paid very well to perform that test and all other tests.
It's all based on a profit structure., even the initial office visit.

 

[NoNoNo2022]

Yes I’m sure they are happy to bill my insurance company for these tests! Lol but I need to get them done. I’m having some sort of neurological problems going on with my nerves in my mouth/face. Don’t know what it is but something is going on. The burning mouth and tongue/throat fatigue is very frustrating.

 

[ShiftKicker]

When you get your results, please let us know. Until then, posting more is likely not constructive.