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

one more question- I am scheduled for a CT chest on tuesday, but a CT Angio (I Have had tachycardia, so they just want to make sure I don't have a PE as well).. but will a CTAngio show a thyoma if I have one? thanks in advance

Not 100% sure, but I expect if they're CTing your chest they'll find any thymoma (if there is one) when they do. I'd be surprised if they do a chest CT and skip the middle/right side.

Have you considered trying ptosis crutches?

CT angio=large dose of IV contrast.
I do not know if you have MG, but for patients with MG it can be dangerous.
Make sure they are aware of this.

thanks so much yall!!! I wasn't aware of contrast being dangerous- why is that? I have had contrast for my MRI's since this all started..without any issues.. I just wasn't sure if the distribution of the IV dye would make it harder to visulize a thymoma? (i know ct abd/pelvis with contrast will make it difficult to see kidney stones.. wasn't sure if this could kind of be the case with a thymoma?)

Ptosis crutches?? I looked those up.. ick!! I would think that might just drive me insane too haha.. i'm sure i would get used to it.. if i lay down and shut myeyes for fifteen minutes I'm good to go for an hour or so more.. but if i don't rest my eyes all day, by the end of the day my eyes ache with the heaviness of the eyelids- do yall get this too?

part of me hopes that they do find a thymoma on my ct.. as much as MG is a pain, my mind would rest easier konwing it is that rather than cidp.. or something else.. i want to fit into a nice pretty little box where my mind can rest assured that I do have the correct diagnosis!!!

The dye is used for MRIs (gadolinium) is totally different than the dye used for CT's (iodine).

I was told the allergic ratio for gadolinium is quite low. But the tech's are always on the look out for any reaction to the iodine. You'll be asked if you have any allergies to shellfish as they have a high iodine content.

When I told the tech I was 'probable' MG - they mixed up what they called 'contrast light'. Don't actually know what that is but they said they use it for anyone who has either had a reaction or may be likely to either have a reaction to contrast dye or be stressed by it.

No matter what dye they use, always drink tons of water in the 24 hours after to be sure your kidneys stay safe.

Good luck with your test!

that is good to know!!! I doubt I have MG.. but I do have this mystery illness that scares me a lot.. I get IVIG every 2 weeks.. it would be comforting to me if we could find a name for it, and it was in fact a treatable disease..

Another MG question- Both times I was post partum I noticed this, as I do when my symptoms are worse- my lips seem bigger or pursed out.. I know i sound crazy when I say that.. but im not sure if its the muscles in my face are just weak and therefore I don't hold them in as much or what!?! I thought it was just some wierd post partum thing until the rest of my body went all weak and wierd too!!! Ever heard of this with MG??? I have the nasal voice at times, droopy eyelid, slurred speech among other things..


Also.. (sorry I am full of questions).. When my symptoms have worsened at times recently my voice is strange- like it is collapsing in the back on my throat (I looked in the mirror to see if I still had elevation of my soft palate, and I defintely did), but it is really wierd, as am I apparently!

I don't know that my lips purse out...because I'm too busy focusing on the corners of my mouth that droop to my chin!! Honestly, it looks like a frowny face someone would only draw on for Halloween (or maybe sad face on cartoon character!!).

I remember many times folks at work would think I was displeased or upset ... and I could never understand what was giving them that impression! Let's hear it for non-verbal communication !!

On another forum I follow, some people with Apraxia of Eyelid Opening (ALO) use ptosis crutches, but others use clear Nexcare medical tape to assist with keeping their eyes open. One woman uses the transparent tape, stretching from her outer lids up to her forehead. She styles her bangs over the ends of the tape, uses eyebrow pencil on the tape where they cross her brows, and wears tinted glasses. She says people don't notice it at all.