I am still technically a mystery.. but I had weakness ALL over initially.. distal included, where I couldn't even hold a spoon, pen etc.. couldn't suck through a straw etc.. I also get numbness tingling on my most affected areas.. After IVIG i got my life back where I could smile, hold a pen again and swallow again... they all fluctuate all the time.. If i have a cold or have allergies where I have to clear my throat often,, by the end of the day I can't hardly swallow anything until I completely rest my bulbar muscles as much as possble for 15-20 minutes..

They did an epidermal nerve/skin biopsy on me and it confirmed I had severe small fiber neuropathy.(I mean my findings were crazy abnormal, which was shocking to me, as I always wonder if the sensory stuff is in my mind)!. which I guess explains my tingling/numbness, as my NCV and EMG's are always normal... (and i've had a ton the past 3 years).. which they tell me all points to autoimmune issues...

I also have slightf diffuse muscle wasting, which is why i've always put LEMS pretty high on my list, as it can have muscle wasting, small fiber neuropathy and the bulbar symptoms with it.. otherwise, no one really can figure me out!
Another thing that points to LEMS for me is first thing in the morning if my IVIG is wearing off I can't grab my phone blink my eyelids for the first few minutes of being awake.. I Have to try blinking and making fists, taking big breaths a few times before my muscles kick in.. I drink coffee which helps tremendously.. and then my muscles get weaker again later on in the day.. all dramatically improved with IVIG..

Hope this helps!!! are you seropositive MG?