yes... I used to LOVE food, but now I just see it as more of a chore most of the time, as it can make me sick.. I have been strictly gluten free x over 2 years since this all started in case that was the cause (i have family members with celiac).. I do love it when I find food I like and it doesn't cause issues! :)

haha, yup, right now I'm late for my IVIG and everytime I catch a glimpse of myself in the mirror i'm a little horrified each time - my face looks all droopy and lopsided.. and I realize the thing I am seeing in my right eye visual field is in fact my droopy eyelid! At least I have more than a snarl of a smile again though :)

Hi Sarah,

I also have POTS dx- probably hyperadrenergic type secondary to Ehlers Danlos Syndrome- had symptoms my whole life... I got my POTS dx after I was on an EDS board and someone was talking about pre-syncope and I looked it up, ha- thought it was normal to have vision black out when standing as it had happened my whole life! I am also new and working on possible MG dx. My POTS has been fairly well controlled, but having a battery of symptoms and fatigue lately.

Nice to meet you :)

Bny,
I know the feeling, food its a chore some days =( I'm really glad the ivig is helping you,i hope u find some relief soon.

Mutant,

Eds is a component I've been interested in, but so far i have not found a doctor willing to test. I know how it is, I've been blacking out since the day i could stand on my own..lol I've had full conversations where i couldn't see or barely hear waiting for the world to come back in focus, all with a smile, faking it.I'm told i have neuropathic, autoimmune pots. I hope they get you figured out so you can get your symptoms back under control

Feel free to message me with any EDS questions. I've had my dx for over 20yrs. It is weird looking into MG world with newbie glasses- with EDS I'm used to being one that has been around and can answer most things :)

Good luck!
Karen