Tongue spasms, slurred speach. Bulbar? 24 y.o.

[ChetLow]

Hi everyone!

I’m a young male, 24 years old.
I’ve finished my medschool a year ago. Currently I’m in training, which is approaching it’s end. I’ve got lots of plans for the next years, which include moving to the US.

Now, with this in mind I’d be incredibly grateful if PALS and CALS, other people exposed to the problem could give their opinion and share their experience. Would I be diagnosed, I’d have to change all of the plans, potentially cancelling the exam and refunding money, which my parents will likely have to spend towards my care at some point.

On the 8th of April, on Monday, I’ve spontaneously developed slurred speech at work.
My tongue was painlessly spasming in the middle of a sentence, a couple of times even. I’d have to talk „around” it. Sides of the tongue would contract and it wouldn’t move. If I’d talk for 10 seconds, half of my speech would be slurred in an on/off fashion. Some words or their parts would come out perfectly fine, some not.
That was going on for the whole day, laughed it out with our colleagues, as the speech was still kind of intelligible. When looking in mirror - tongue spasm, then bouts of muscle contractions on both sides and then relaxation. It was kinda looking like a moving fish or a snake. Not “bag of snakes” and those continuous microfascics in atrophied tongues.
Shrugged off as stressful work.

Then I went home and I googled it.
And read the research also, and the posts of this forum, and reddit.

I’ve experienced my first panic attack shortly after. My body was on fire, tachycardia, high BP, shivers all over my body, shaking because of fear and anxiety. These tongue cramps now happened spontaneously. Sometimes tongue would thrust in my upper teeth/palate. Speech became 90% slurred.

Went to hospital, calmed down a bit. On/off slurring still.
CT scan clear, normal neuro exam. Went home. Scheduled an MRI. Next day MRI was clear. Slurring would get better by evening, for some time it would even disappear.
Bloodwork completely clear. No Lyme.
Next up was hellish week at home.
I’ve almost never slept more than 6 hours since that day, appetite was completely gone. Speech was still slurred on/off. Random panic attacks, sometimes triggered by these spasms or slurring, sometimes triggering and causing them.

On Friday got a prescription for Zoloft + Lyrica 150mg from psychiatrist.
By the next Wednesday I’ve felt exactly the same as I was before this incident.
Got cleared by my country’s top ALS specialist. She even did an extensive muscle ultrasound, including sublingual muscles (under the chin). Neuro exam also normal.
Got off both meds on that day, bc of bad tachycardia episode.

But the anxiety creeped back, with panic attacks. Hopped back on lyrica. Sometimes my tongue felt weird near the tip, sometimes I’d slur an S, T or Z sound. They would come out as “sth”, “th” or “zth”. Sometimes I was able to continue talking normally, sometimes I wasn’t, and the “cramp” would not let me correctly pronounce these letters.

This continues to this day.
As a rule of thumb it gets worse in morning shower, after brushing teeth, or drinking warm/cold liquids.
Today I was driving, sipping warm coffee, got this spasm for the first time since that hellish week probably. Was not able to say ‘S’ correctly for 10 seconds maybe. Tongue just wouldn’t listen. Also weird jaw sensations, like the muscles were tightening.
That’s 1.5 months in. No noticeable weakness, but I still slur sometimes. Rarely, but I do, and they’re not psychogenic. Sometimes I get random twitches 5-30 sec in my front deltoids, chest and forearm muscles. Also in my lips and eyelids.
No, my tongue is not twitching.
I think that’s a side effect from Lyrica and they don’t matter as much.

Right now started taking Zoloft again, tackling anxiety with psychiatrist. Still sleeping 6 hours daily, still bad appetite.
Still on Lyrica. I’ve tried to quit the “day” pill and stay on the “night” one only (halving the dosage). Did not manage to do it. Planning to taper off when Zoloft will start working.

So what I’m asking is this: did als start like this, or similarly for you or someone you know or knew?

I understand that typical onset of bulbar is spontaneous partial loss of function (speech, swallowing), especially in the elderly. I also understand that in young patients als is usually (well, it looks like) less rapid.

Next half of my year is the most important in my life, it’s crucial for me to understand the chances. The period before getting the diagnosis is incredibly hard and full of challenges and unpredictability.

My heart goes out to all of you, hope your fight is going along great!
I’ll definitely be donating an s-load of money if I will get the chance to escape the diagnosis and get to the US.

 

[lgelb]

You've answered all your own questions. You don't have ALS, but you've talked yourself into becoming afraid of it, and that's health anxiety. It's even more common for this to happen among young aspiring/early health care professionals. The timing of your florid episodes and sporadic episodes thereafter is pretty textbook, and you had an expert ALS ruleout.

Lack of robust sleep architecture as is practically a requirement in med school and anxiety cause all sorts of physical manifestations, including rushing speech, dry mouth/lips, that can affect enunciation. I would be curious if you actually tried a focused program of interval hydration, a sugar free cough drop between liquid intake, etc. (And, of course, tried to adjust your schedule to accommodate stress-free sleep periods with balancing physical activity, etc.)

A consult with an ENT on other self-help for the jaw/tongue spasms since it has been determined that they are not neurogenic isn't a bad idea. Some massage therapists have a specialty in helping these.

I can't imagine how the Lyrica could be helping what you've described, and it has its own downsides, but that's between you and the psychiatrist. Very often, episodes like this are triggered by other types of issues/fears/concerns entirely, so if your psychiatrist is not doing talk therapy, I would see a counselor and really try to get to the heart of things.

 

[ShiftKicker]

Hi there-

It sounds like you've done a fair amount of research already, so you know that symptoms that improve or disappear point towards something else. There are many reasons for speaking/swallowing issues, so an ENT would be the person to go to to properly explore function. Whether the issue can be attributed to anxiety, either partially or wholly, is something you would need to work out with your doctor and psychiatrist.

Take care

 

[ChetLow]

Thank you so much for reassurance!
I'll get a more extensive workup with neurologists and will push for a tangible diagnosis, then taper off from Lyrica.

Although even right now I get these strange tongue spasms, like quivers, which can be also induced by repeated pronunciation of soft ‘s’ and ‘t’ sounds. I also feel tightness in my lower face and lips. Thanks to zoloft I don’t feel so fearful and anxious anymore.

Thank you very much once again and I hope you’ll have a great day!