NeuroTalk Support Groups - Experiences with Ocular MG?

Can anyone tell me about Ocular MG?

Most everything I see focuses on drooping eyelids and the ice test to see if cold improves the droop. Very little talks about the effects on the eye muscles themselves.

I have had eye muscle disorders/dysfunction/disease/whatever for years now. Nobody really knows what to call it anymore, nor what to do about it. At first, it was diagnosed as Thyroid Associated Eye Disease (TAED), which is what they now call Graves Disease of the Eyes. But, you get TAED once, wait out however long it takes to run its course (1-3 years), then fix the results and it's over.

So, we waited, we tried fixing the resulting misalignment. It came back for another round, which is very rare (like 1% or less). We waited it out. Adjusted glasses and visual/glasses tricks to compensate.

It came back for another round. same routine again.

It came back for ANOTHER round. Ummmm..... (ophthalmologist has run out of tricks to help at this point.)

Somewhere in all that, someone decided I had intermittent vertebro-basilary insufficiency from vascular thoracic outlet syndrome in my right shoulder, from scarring from broken-and-fixed collarbone from massive car accident during all this TAED. But no one can confirm that because the plate in my shoulder interferes with imaging, and it only happens if I move wrong and compress the blood vessels for that moment.

At one point, one day, my right eyelid just kept falling closed. Suspicion of MG was brought up. But my initial AChR blood test says no. And around here, if the first blood test is negative, they will not order the second test (MUSK) or anything else. (There is no convincing them it has any value. Medicine in this area is pathetic.)

All along, I have problems with shortness of breath that no one can explain, and many days has absolutely no explanation for why. Some days I cannot simply stand up without huffing and puffing, let alone say more than 2 words per breath. For periods of weeks or sometimes a couple months I will have trouble with arm weakness that means I cannot brush out my hair or reach up to do something out in front of me or above chest level. And so many other symptoms of MG, but they vary from day to day, week to week, and that first blood test says No, so the doctors say no.

15 years ago, when I was pregnant with my daughter, I was so weak and sick and out of breath that the doctors, OB and general , were extremely worried, but no one could figure it out. MG was never mentioned or tested for. I spent 9 months curled up in a little black ball of evil sickness, could not stand still and talk at the same time (not 2 words between having to heave huge breaths), could not lift my arms to eat lunch after the strain of walking to the other end of the building to microwave it, really bad stuff. It got better after I gave birth, but not completely. Years later, when the eyelid stuff happened, and I got in-depth info from the MG organization while waiting on blood tests, it described what I went through during that time perfectly, as if I wrote it all myself. But the blood test says no, and doctors here won't diagnose anything without a lab test to tell them they're right.

Meanwhile, my eyes have trouble coordinating their movements. Looking upwards is a huge strain. Changing gaze quickly is a disaster, they don't both go to the same place at the same time, and visual confusion, dizziness, nausea, etc. result. I don't drive anymore. I don't read anymore. I keep my laptop screen blown up to a ridiculous size to make it easier to see what's on it. If I look at a picture, especially a busy picture, and I don't have some idea of what I'm looking at when I start, I cannot figure out what it is I'm looking at.

I have pain in my eye muscles, especially if I've been making them work, like paying bills, which will also give me migraines. I have tape over one half of my right eyeglass lens, so that when that eye wanders outward, it just goes fuzzy instead of causing double vision, on top of prism built into that lens to try and help. My functional vision is about nil with anything within about 5 feet of me. Some days, I wear an old pair of glasses that's only about half the strength I need, because it's just better to not really see than to continue to fight to make my eyes work. This has been going on for 10 years

I have been to two neuro-opthalmologists, unfortunately one could not figure it out and just stopped communicating with my doctor (never ever answered numerous messages. never answered my calls. when I had them send records, she had never done more than just the handwritten notes from when I was there. Warning--this is what doctors at Columbia do when they have no interest in you, been there for the thoracic outlet also.) The other, while of great reputation, has gotten old and is not exactly, um, competent any more (his intern and technician stood right next to him playing with and laughing at stuff on their cell phones while he yelled at me because what I wrote on their 8 pages of intake papers was not exactly word for word what I said verbally on the spot when he asked me, and what was I trying to pull on him? Be careful who you go see at Yale.) I have been to neurologists, who passed me off to the neuro-opthalmologists after promising they would figure this out and not pass me off to someone else.

Nothing I have ever presents in typical fashion, so I'm wondering if maybe I have more of the eye muscle problems, but not the eye lid problems, and, along with the other body symptoms (breathing, weakness) maybe it really is MG?