[bny806]

Hello everyone!! I have been on here before with my "mystery"illness.. curently diagnosed as CIDP (I have had sensory issues too, but sometimes I question if I really Do? haha).. anyhow as far as CIDP goes I am "atypical" as my emg only shows one area of demylenation.. everything else normal (I had an ALS scare in the beginning and still am a mental wreck from the thought of that)

Anyhow.. My question and problem is my ptosis.. its driving me mad! my eyes feel SOOO heavy!! I do have tongue atrophy too, which of course freaks me out.. I am musk negative as are all my other MG ab (but I have never mounted ab to hardly anything- vaccines included).. I am receiving IVIG, which helps tremendously.. but when it starts wearing off, or if I get sick - my eyes droop like crazy as my speech gets worse and sometimes even swallowing

I saw a neuro opthamologist, I never mentioned the ptosis to him, but I just got his records and he said I had bilateral eyebrow and eyelid ptosis.. as well as pale optic discs (possibly optic neuritis in the past).. Anyhow.. Do yall have heavy eyelids where it is uncomfortable???

My 32nd bday is tomorrow, and I swear I want to go get an eyelift to relieve this pressure!! I have never had "hooded" eyes.. you could always see the eyelid crease, but when this all started the first thing I noticed when I went to put on eyeshadow was my crease was different and it was hard to keep my eyes open.. ugh I just don't know what to do!!!!! any suggestions??? does anything else cause this? (I have muscle atrophy diffusely, but in my hand and tongue especially)..though it is very mild