AZOOR, Myasthenia Gravis

Hi! I’ve not posted really so here it is.

I have eye issues - symptoms that are grouped under the umbrella of AZOOR - Acute Zonal Occult Outer Retinopathy. I have an epiretinal membrane in the back of my left eye that continues to grow. Big blind spots in my visual field. A bunch of other things with my eyes. The most recent is binocular diplopia - double vision that goes away if you cover one eye. It’s a very typical presenting symptom of Myasthenia Gravis. I have other symptoms of it too, but no diagnosis yet. I see very good doctors at Duke, but even there sometimes they have no idea. I am having a single fiber EMG next week, it’s supposed to be the gold standard of MG testing. But even if it’s negative, I could be seronegative. I have other issues too - Bipolar II, Severe Anxiety, Complex PTSD, Fibromyalgia, Chronic Fatigue, and I fall a lot but no one can tell me why - I lose my balance, but I’m not dizzy.

I didn’t see anywhere else to make my first post so I hope here is ok. I suppose I should say I’m a 54 year old lady, although I think it’s just a number.

3 Likes

Welcome, good luck with testing😺😜

Thank you 😊

Welcome! It’s appropriate for you to start a new discussion anywhere and anytime. There are very few experts on here as far as I can tell. But there are a lot of people with helpful hearts and a LOT of experience in a whole range of medical incidents/experiences.
Again, welcome! Reach out anytime.

Good luck with your test

Thank you all so much:)

Wcome, welcome!!! Good luck with your EMG! I’ve had several of them and they aren’t fun, but also wasn’t the worst test I’ve ever had either. Keep us posted on whether they make the MG diagnosis for you or not.

I have a diagnosis of ocular myasthenia gravis until I see a neuromuscular specialist. They are supposed to be able to tell me if it’s generalized.

Oddly, it’s a relief to get a diagnosis, even if it’s not a great one.

1 Like

@Tay I know the feeling! I’ve been fighting for a diagnosis for 5 years for my chronic illness. My Dad and 3 sisters all also have very similar issues as I do, so we’re pretty sure it’s something genetic. But my doctors believe that we just don’t know enough about genetics yet to make a true diagnosis, they are hopeful we will be able to get a true genetic diagnosis in the next 5-10 years. So for now, we just try to manage symptoms as well as we can and just try to hang on for the ride.

Isn’t it incredibly frustrating?! The dx does help, but I’ve still only got half a dx, until I see the neuromuscular person. It still doesn’t likely cover the balance problem I’ve developed. In the past two years. Just randomly losing my balance - and actually falling and hurting myself. Blew a meniscus, had surgery, and since, have fallen more than a dozen times. My doc says it could be the MG if it’s generalized and my leg muscles are weak. It’s more than that - it’s hard to explain. I feel loopy, not dizzy or like vertigo, it’s like feeling drunk. It’s so weird.

1 Like

@Tay have they tested you for LEMS (Lambert-Eaton)? I know that has some significantly similar symptoms as MG.

Not that I know of. They’re so similar, I honestly don’t know

1 Like

They are so very, very similar! But it may be worth asking your doctor about LEMS.