Ok, you guys are very knowledgeable, so I have a mystery for you: I have been a mystery with myasthenic like symptoms for over 3 years now.. getting IVIG every 3 weeks.. I crashed, couldn't breathe, droopy eyelids the whole nine yards 3 years ago.. IVIG saved me... so LEMS is at the top of their list.. though I have some sensory issues too (confirmed SFN).. I have had strange things happen sometimes, and I think the heat makes it all worse.. but

I get all over muscle weakness, feels like an elephant on my chest, my pulse ox even goes down, heart rate goes up.. I'll get a headache, roaring in my ears(feels like my head is in a bucket), I start feeling disoriented... usually It causes me GI upset as well.. Once I sit down and rest for 15 minutes, the headache, roaring, breathing all of that improves.. though I will remain weaker.. this only happens during exacerbations (the kind that last days).. It's pretty scary and miserable
Thanks for any insight/opinons

My symptoms are very like yours and that is exactly how I feel every day when the mestinon starts wearing off. I also break out in profuse sweats at the same time and I am often soaked from head to toe.

kathie

That's what happens when your MG (or LEMS) isn't stable.

I wonder if you have a channelopathy, too. Well, MG and LEMS are considered channelopathies, but I wonder what else might be going on.

The fact that you have both nerve and muscle issues means that you might become fatigued more quickly. Do you balance rest with activity? Do you take naps?

Baby yourself!!!

Annie

Thank yall so much.. Yes Annie - I have wondered the same thing about channelopathies... but I just don't know which one I would have? I feel like it has to be something like that?! I don't balance much rest into it all.. I am a working mom of two kids under 4... so not a lot of rest goes on... I do well when I have my IVIG Kicked in.. but as soon as it starts to wear off everything becomes more difficulty - chewing, swallowing, walking up stairs.. smiling and breathing etc.. even flexing my abs to go to the bathroom gets difficult.. but thank Goodness for IVIG.. it's my miracle drug!

The ear roaring head pressure/disorientation thing, along with the extreme shakiness during adrenaline/excitement of any sort is baffling to me.. I have thought about vasculitis and channelopathies.. but can't come up with anything that fits.. (I know most people DON"T fit into a nice box however).... sigh!