Concerned about Bulbar ALS

[Phx_dad]

Mod note- Closed for multi id. This is not helpful to you, nor normal appropriate behaviour

Hi everyone!

Thank you all for being so supportive and taking the time to ease the anxiety and fears of so many people while dealing with such a serious illness. I really appreciate the advice and wisdom you all provide, and I’m sure other folks on this subforum do as well.

To give some background, I have read the sticky and I have gone to the doctor. I am a man in my early to mid 30’s. The doctor didn’t really seem to acknowledge my concerns and didn’t test anything besides routine bloodwork that came back fine. I explained I was concerned about my speech, as it feels like I’m occasionally slurring or misenunciating words. For instance, this morning I said “4th quarta” instead of quarter, and last night I said “I’m throwing your root beer at” instead of out. This probably happens on a daily basis once or twice going on 4 months. I can read aloud just fine and have timed myself reading certain passages and seem to be able to read at about 230 words a minute aloud with no issues. It’s really when I’m spontaneously talking that I notice issues.

I’ve looked at my tongue and soft palate. My soft palate rises symmetrically when I say “ahh”. My tongue doesn’t seem to have deviation when I stick it out. But when I click my tongue very quickly up and down, it does appear to rise more on one side than the other. I also feel like I’m speaking more on one side of the tongue than the other if that makes sense. Nobody has noticed really bad slurring or has commented on my speech, but it’s clear when I use the wrong word or mispronounce something. I can also move my tongue up, down, left, right, quickly side to side, curl it, clover it, etc with no issues. But one side definitely curls up more when I click my tongue quickly

I spoke with a SLP briefly over the phone, and she told me I sound very clear and my thoughts are cohesively communicated, but we have a formal evaluation this week to specifically identify signs of dysarthria. This was at my request, she didn’t feel it was necessary unless things progress.

I also have a psychiatry appointment next week for health anxiety.

I’m really curious to get this forums perspective on my symptoms and if this sounds like the beginning of ALS. I really hope it’s not, but want to get outside perspective from this group who has direct experience on the matter.

I really appreciate your time! Thank you for your help and support.

Adding because I left out some details… I don’t have issues swallowing, but wake up with a very dry mouth. Once I hydrate, I feel like my mouth has more saliva than usual? This could just be hyper vigilance

 

[ShiftKicker]

Hi there-

Mispronunciation of words is not part of the constellation of symptoms that would give a doctor cause for concern about ALS. Reading through your whole post, it's pretty clear you are very worried about your health. You mention hypervigilance, so you are aware you are on high alert and analysing every single thing. Such a high level of vigilance can definitely affect perception of entirely normal quirks of living in a human body. People in perfectly fine health mispronounce words, experience clumsiness, twitch, have uneven tongues, have dry mouth/too much saliva, vary in muscle size from side to side, etc.

My hope is that between a clean exam w the SLP and working with a psychiatrist to set up a plan of action for your anxiety, you will be able to reduce your stress and be able to take a step back from thinking you are on the edge of a health crisis. It's a hard place to be and you deserve a break from that.

Take care and please do let us know how the appt with the SLP goes.

 

[Phx_dad]

Thank you for your kind reply.

You mentioned constellation of symptoms… I didn’t really see in sticky what these are. My mispronunciation is occasional, and the slurring is maybe 1-2 words a day that I can quickly correct.

Also to add context, singing songs or reading aloud can be done with no issues at all.

But I notice certain phrases are really tough for me at my normally high speed speaking cadence and idk if that’s always been the case or more acute. If I slow down, I can say anything no problem.

 

[ShiftKicker]

Hi there-

Here you go, from the link:

Symptoms
The major initial symptoms of ALS are clinical weakness, inability to perform certain functions (failure), atrophy detected by a physician, and upper motor signs detected on clinical exam by a neurologist.

Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech that others notice because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked "are you drunk?" it is a good sign!

Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our undiagnosed visitors. Please look up “globus” and learn that it is a very common complaint especially among the stressed.

 

[lgelb]

As you acknowledge, it's not clear how new some aspects of your mispronunciations are, but unquestionably stress and lack of refreshing sleep can trigger or worsen them. And assuredly we all have them, along with lapses in word-finding.

Dry mouth, allergies, dehydration, and minor tongue irritations are other things to consider.