[Sarah R Tuuri]

Giselle: No, I have not experienced any unexplained weight loss or muscle atrophy, and I did read that is typical of respiratory onset. I have had some muscle twitching, in my chin, left arm, and left leg. I don’t know if it’s related or coincidental. I have another neurology appointment on November 12th, and I am hoping that my fears are NOT confirmed!

[Sarah R Tuuri]

I should also add that, as was mentioned by another member in a previous post, I have experienced unusual chronic sinus congestion for quite some time, and about two weeks ago I started to have a hoarse, raspy voice due to excess phlegm that I can’t seem to clear. I don’t know how usual that is for respiratory or bulbar onset, but maybe someone else can enlighten me.

[Sarah R Tuuri]

Greetings. I am a 47-year-old female who is afraid she might have respiratory-onset ALS. It started back in January, with the development of what I can only describe as erratic, dysrhythmic breathing, sometimes accompanied by squeezing chest pain. The usual unconscious rhthym of breathing seemed to have disappeared, and I started to have difficulty coordinating breathing with talking, eating, drinking, swallowing. As it continued unabated and unexplained, I did various tests, including a pulmonary function test this summer and an arterial blood gas test, most of which were normal (the blood gas test showed “metabolic acidosis with complete respiratory compensation,” which my doctor declined to explain). Then in early September I developed what appears to be gastroparesis, still waiting on testing for that, and difficulty swallowing: I cough, clear my throat, and/or have a wet, gurgly voice after eating or drinking, and have to swallow multiple times per bite or sip. A modified barium swallow test did not show any dysfunction. How that’s possible, I don’t know. I’m also experiencing chronic muscle twitching in my chin, and for the past couple of weeks I’ve been short of breath even when I’m just sitting and talking, and I have some serious emotional lability making life difficult. My doctors are trying to tell me this is Functional Neurological Disorder brought on by trauma/anxiety, but that simply doesn’t explain the degree of disability I’m suffering from these bizarre symptoms. I know respiratory onset is rare, and to be followed by bulbar symptoms that appeared almost overnight would be unlikely too, but…. Any insight, advice, etc. you can share would be greatly appreciated.