Very concerned about bulbar onset

[j4567]

Hello everyone. Thank you so much for taking the time to read this. My name is Julianna, I’m a 21 year old female.

For the past month and a half, I’ve been experiencing a myriad of symptoms. It started in early July when I began experiencing hoarseness, post nasal drip, and a bit of difficulty swallowing. I had muscle twitches in my arms and legs as well, along with my left eyelid.

A few weeks in, I began noticing I had trouble articulating my words sometimes.

This week, I developed a lisp and some slurred speech. It was originally only my “s” sounds, but throughout the week it progressed to trouble articulating nearly everything. My tongue feels very big in my mouth 24/7, even when I’m not talking, and it’s a bit sore and VERY fatigued all the time as well (also when I’m not even talking).

It’s impossible to focus on anything else. I’m terrified to speak because of how difficult it is to use my tongue. I’m living in a constant state of panic. I’m making doctors appointments and trying to get in as soon as I can but the panic is impossible to live with.

I originally thought I was in the clear because I wasn’t very knowledgeable about this type of thing and assumed some of my symptoms pointed away, but after reading many posts on here it doesn’t seem that they do. I’ve even read that people experiencing the same symptoms as me have had clean EMGs early on and ended up having ALS, so now, even though I plan on asking my doctors if they can order one, I know my panic won’t be subsided because even if it’s clean I could still have it and not find out for months.

I know I’m very young and I know I need to see my doctors, but I’m looking for opinions because this is consuming me. The feeling of my tongue is just absolutely impossible to ignore. It feels huge and fatigued nonstop and it’s a horrible feeling.

Can anyone let me know if this sounds like ALS? Or if it doesn’t? I don’t really know what to do about the EMG possibly not being definitive, especially since this is so early on. Any help at all will be appreciated. And I’m so sorry in advance for taking up anyone’s time with this. Thank you so much.

 

[lgelb]

This sounds nothing like ALS, and I advise you to stop reading about ALS immediately and spend that valuable time doing the things that people with ALS cannot.

Instead, reading your account, post-COVID, allergies, GERD, poor sleep, dry mouth, dehydration, stress, and so many other things spring to mind. Eyelid twitches in particular are often down to stress/sleep issues. If you have often woken up unrefreshed, you might ask about a sleep study.

Bulbar nerve damage in ALS does not cause the tongue to feel big, sore, or tired. You just can't do things you used to do. Has anyone else, without prompting, commented on speech changes? Has an ENT examined your tongue, etc.? It could be something as simple as an infection or injury (or cracks from dry mouth/lips). Have you tried tweaking your diet and liquids to see if it helps?

Yes, you do need to work with your doctors and keep your mind open to all the possibilities, including the one where you have some issues you are working out and are projecting them onto your physical health. I am not saying the latter is the case. I have no idea. But you're in the wrong place here, fortunately.

Best,
Laurie

 

[j4567]

Thank you so much for your response Laurie. People have commented on my speech changes, as I’m in a play right now and the director has noticed I’m slurring a good bit of my lines. An ENT has just recently examined me and didn’t say anything about the appearance of my tongue. I’ve indeed tried tweaking my diet and it seems to have helped my hoarse throat, but not my tongue/speech issues.

I am glad to hear you believe I’m in the wrong place. I really appreciate you taking the time to respond. Thank you very much for your help.