Possible bulbar?

[DoctorLove]

Hello all. New here.

Don't know exactly where to start so I'll try and give a bit of history before going into what's currently going on.

Around 2006 I had a wierd tongue episode. It basically jerked very hard about 4 times and it freaked me out to the point I went to the er thinking I was going into a seizure or something. Doc said he believed it was just bc I was falling alseep, but I assured him I was wide awake. Anyways, tests came back fine but bp was pretty high. Probably from the panic.

Fast forward to about 3 years ago. Had a similar episode of the tongue jerking. Except this time it was more of a twitch. Over the next several days it began going all over my body. Face, hands, feet, etc. You name it, it twitched.

After looking up symptoms, as we all do, I came across ms and als. And immediately thought omg. I have it. I got an app with a doctor who done an emg, which came back okay. And the neuro didn't do any CT scans or anything as she believed I had bfs.

I've dealt on and off with these twitches for a few years now. So onto my current situation.

A month ago (to this very day) I was talking to my wife and had a horrible pain under my tongue in my throat (kind of above my adams apple). It felt like a muscle catch / charlie horse.

Well, a day or two later I noticed I kept having them every so often. Along with some other pain on the sides of my neck. After about 5 days total of that, I started getting severe dry mouth, had some trouble talking. Pain when swallowing.

As it has went on, I've had days where I could barely talk. I originally thought I was getting laryngitis, but a visit to the doc ruled that out. They said they were stumped, but gave me antibiotics just incase. They arent really helping.


My voice has went in and out and sometimes it's hard to speak as my voice cuts in and out and gets weak. Not only that, sometimes I have slurred my words and have had issues pronouncing things. Like I'm stumbling over my words. It's been going on a month straight now so it's got me thinking it's something bad as some of the symptoms are pointing to bulbar onset (which brings me back to symptoms I've had for years). I'm also having face twitching with it. Weather or not that's related I don't know. I've also noticed that I've gradually gotten tongue dents and grooves the past year. I had one appear on the left and over the past few months iv gotten a pretty deep groove going down the middle that I didn't before.

I have an app with an ent doc, but it's still a week away. Really don't know what to think or where to go from here.

 

[IgorZilio]

It's been 12 years since your first symptom. And nothing else anywhere in your body (weakness). ALS always progresses and affects other regions of the body and the timescale for this is months, a few years. Not decades. Besides, statistically speaking bulbar-onset ALS has a faster progression than limb-onset. Twitching alone doesn't mean much, in BFS you can have a lot of tongue twitches. Pain is not indicative of ALS, if you were choking out of the blue especially with liquids and dry foods that could be worrisome. Another thing: the weakening of bulbar muscles results in drooling, not dry mouth. If your tongue was so atrophic I'm sure there would be much more problems. You cannot objectively determine if you have atrophy or not. A doctor can evaluate that. And again, clean EMG = no ALS. See the otolaryngologist that I'm sure will be able to evaluate you and answer any questions and doubts regarding your problems and find out what's going on, if anything. It does not seem to point to ALS, the opposite actually - your history points away from it.

 

[DoctorLove]

Thanks for the response.

The initial tongue jerking was a long time ago yes. But the rest has been very recent. The past 5 years it all has been bad. I simply added the tongue jerking from 2006 bc it was the first time I ever had one.

All the bad consistent twitching started in 2013. emg I had was about 3-4 years ago. He came back ok EXCEPT for the tongue. He couldn't get a clear enough reading due to the fact that it really hurt and I couldn't hold the position he needed me to. I was also let down that the actual neuro didn't do any testing and basically just assumed bfs.

And all the mouth issues have been going on for a month straight.

I haven't choked on drinks or food but I have randomly choked and had to gasp for air while talking.

 

[ShiftKicker]

Best person to help you really is the ENT as they can see what's going n structurally and mechanically. It seems like forever, but 7 days is really not long at all.

As these tongue issues have been going on for over a decade (or 3 to 4 years for twitching) ALS is not really something you'd be looking at. Bulbar ALS is notoriously fast moving and profoundly disabling. What you have going on doesn't seem to follow that pattern, despite how confusing and worrisome it must seem.

Please let us know how the appointment goes.

 

[IgorZilio]

In your appointment consider asking your doctor about Bulbar Palsy or Kennedy’s disease. But not ALS. The timescale and progression really don’t add up.

 

[DoctorLove]

Not really a decade. I had 1 freak accident all those years ago. And then 0 issues or symptoms until 2013. Then that's when I got all the tongue twitches and other twitches that happened daily. I've also had some instances of my foot randomly jerking. It's happened to my jaw as well.

 

[Atsugi]

Yo, Doc.

Not ALS. Fuhgetaboutit.

Bodies can be weird. The older you get, the more you'll see your body's natural "defects" and "abnormalities" come out.

See the ENT. In the meantime, relax.

 

[KimT]

A good ENT will do a thorough eval. with a scope and then a swallow test. I wouldn't even be thinking about ALS.