New bulbar issues

[fred12378]

Hello everybody,


I posted a message last year about my situation that I resume here :
- 35 y/o male
- end of 2022 : thoracic pain and fatigue
- dec 22 : 3rd covid (vaccinated)
- end of january 23 : fasciculations started in upper limbs
- following months : fasciculations widespread, fatigue, thoracic pain, effort intolerance, impressive weight loss
- clean EMG and clinical in June 23, my neuro said at that time no ALS

In the following months, I always had my fascics, day and night, and it woke me up at night.

Now fasciculations went up to my chin, face, lips. I can't feel them in my tongue though.

But in november, I started having bizarre bulbar issues : tongue feeling "lazy" and heavy, slurred speech, I have to concentrate a lot to speak properly and it never changed since then, it's worse now. I can't pronounce the sound "S" properly.
I have difficulties to swallow liquids (solids are pretty ok) as if something was stuck (I feel the passage).
Dentist said everything ok, and no acid reflux that could cause this.

ENT looked at me and said that he saw "physiological fasciculations" of my tongue. Throat was normal and he couldn't explain my issues, said to go back to my neuro, which I will do.

I still have muscle pain, fasciculations widespread and difficulties to use my hands but no objective weakness (I do lots of sports to reassure myself).

Last month, my PCP wanted to eliminate cancer cause to all this and we found splenomegaly and maybe liver damage (never drank... eating healthy as well). I have to look into it with a fibroscan.

So, regarding all this, I wanted to ask you : could bulbar ALS present itself that way or is it impossible ?
it would be :
thoracic pain and weakness => fascics on limbs => fatigue => fascics in the face => tongue laziness and slurred speech => swallowing issues => .... ?

Should Bulbar symptoms always be before fasciculations in limbs in bulbar onset ?

Sorry if all this sounds stupid, but I am sick of this situation and have to pretend to everybody that I am fine but I am not. I am exhausted and worried about all this.
Thanks a lot and good luck yo everybody here

 

[lgelb]

You don't say that anyone but you sees all these manifestations (reduced swallowing, speech) of bulbar impairment, which is a hallmark of bulbar onset, so the answer is no.

I am not even going to get into the order of symptoms because what you are calling fascics could be anything, including, often, the jitteriness of anxiety, poor sleep, and possibly nutritional imbalances related to rapid weight loss. In addition, you could have long Covid; if so, generally, symptoms gradually improve, though of course your spleen is one of the myriad organs that Covid can affect and so it should be monitored.

Thicker or non-dairy liquids may be easier to handle.

Repeat "no objective weakness" and "clean EMG" to yourself several times. Let us know how the neuro followup goes, but I'm not worrying about ALS on your behalf.

 

[fred12378]

Thank you Igelb for your answer and your time.

My bulbar manifestations are really strong now. I really have difficulties swallowing, talking and even keeping finding my air.
My fasciculations are not due to lack of sleep (I sleep), caffeine excess (I don't drink any), magnesium deficiency (I was blood tested and it's far from low) or anything really that could explain it.
I will write here after my neuro follow up but I have to say I am worried.
Have a good day.