Hello everyone!
I've had a mildly drooping left eye lid for the past 3-4 months. My left eye looks smaller than my right. It improved drastically with the ice pack test (to the point that my other eye looked droopy in comparison). I have double vision but only in certain situations and I'm not sure if its normal or not. If I put my hand and arms length or less away after 20 seconds or so I see double of every finger. If i blink and refocus my eyes it will go away and come right back. I don't seem to have double vision with objects or when reading but I feel like I frequently have to re-focus my eyes and after 20 seconds or so things become blurry. Is tis normal or abnormal? Should i be able to stare at something (while blinking) but without constantly refocusing my eyes? It doesn't bother me reading because as I move down a page my focus has to change.
I also get double vision if looking hard in a certain direction (say up and left) at a finger. It becomes double after 20 seconds or so (my neurologist did this test).
The neurologist thinks I have MG but didn't specifically address if the double vision/ blurry vision is normal or not.

I've also been very fatigued and have some other generalized muscle weakness (neck flexors, hip flexors) but can carry about most normal activities. I have some hip problems which are really flared up right now so I'm definitely doing less than normal and not working. I started PT for my hips and the physical therapist commented that my muscles are about 50% as strong as they should be. I am an equine veterinarian and was previously working 80+ hour weeks with horses, on my feet all day and while I wasn't exercising much over the past 6 months, i feel like my muscles shouldn't be that week after working that much (not like I sat on the couch for the past 6 months! ). They have me do 8-10 minutes on the exercise bike at level 1 and it is HARD! 2 years ago I could do 2 hours of spinning and add in a pilates class before I was tired!
I also feel like my head weighs 100 lbs somedays and just feel weak and tired overall.
The past few days I've noticed a droopiness of my right eye, below my orbital bone the skin droops. It comes and goes throughout the day. I noticed this morning after being outside for 20 minutes in the 14 degree New England weather we are having that my eyes appeared much larger and more open, and then after 40 minutes in the warm car they both were droopy again.
Another strange thing is that when I wake up in the morning both of my eyelids are very droopy and I look very "sleepy". I've read that this happens in a small amount of MG patients but I've only seen that in one place (and I can't remember where!). Could that be from the warmth of my comfy bed? Or could this mean it is something else?

I'm waiting for a CT scan/ EMG and Pulmonary function tests to be done next week. My anti- acetylcholine receptor antibodies were normal but waiting on the results of the muSK antibody test, TSH and a few others (hoping to get them today!)

My family thinks I am absolutely crazy because most of the time that they see me the ptosis is mild and its not that noticeable (although I notice it to some degree all the time). They will say things like well sometimes one of my eyes looks smaller or you're making yourself do that. I mentioned it my physical therapist who also seemed to think I was crazy because he said everyone he saw with MG was a lot weaker than I am and I can still do my exercises (leg lifts, leg curls etc..) I even mentioned this to the neurologist who said she was really glad I came in and pursued it because I do have ptosis and other symptoms of MG and that my eyes should appear the same size! She reassured me that I wasn't crazy or making it worse!

Anyways, thanks for listening! Any advice would be appreciated it, especially about the double vision.

Thanks!

All of your symptoms are definitely not normal for the average person, but absolutely normal for a person who has MG. Sounds like your doctor is zeroing in on the problem.

I have MuSK MG, but please be aware that you can have negative antibodies on all tests and still have MG. There are some different antibody tests that have not yet been developed.

As for the DV specifically, all you write about happens with mild-moderate MG. Unfortunately, it can get much worse. That will be more likely if you test positive for MuSK. I have had truly horrible DV and ptosis at times.

The neck weakness is troubling, as it can precede swallowing issues, which can precede breathing issues. Again, it's so wonderful your doctor is being so attentive.

And then there's your family. Families often respond in less than a helpful manner. It is very frustrating, and is likely "denial" on their part. I'm sure early on in your journey you had days where you tried to talk yourself out of the symptoms (it might still be happening). However, with a little education and hopefully a firm diagnosis, they will adjust along with you.

Keep posting! There are a lot of caring people here.

I understand how you feel. I'm waiting on a diagnosis and notice things that other people haven't but then again it is my body. Some people have told me that I look sleepy when I wasn't sleepy. For years I have exercised a lot and now I cant do much without muscles giving out even though I still do some. I have had slurred speech when I chew or talk. I went a week without eating much because I couldn't. My blurred vision was at first 20 minutes but had pain behind my eye for over a week.. Then briefly when I woke in the middle of the night. The day after I left hospital it was like that all day. now it just comes and goes. I am new to this board and I am glad I found it. Everyone is nice and helpful

I agree with 4-eyes - You have a lot of the signs of mg - glad you have a doc who is apparently understanding and know about mg - my doc at the time I started having problems offered me Prozac because I was all in my head - he couldn't see the symptoms at all even though I could feel them. I finally made an appointment late in the day instead of first thing in the morning and he finally saw what I was talking about with my eyes. He referred me to a neuro who knew what it was immediately. Only took 6 months to get a diagnosis! Hang in there - you have come to a good place to get some of your questions answered.

hello! and welcome, sorry that you have to be here though yes, many people with MG etc can look normal to others, it's hard to explain the weakness I feel like.. It wasn't until I totally crashed that I feel like anyone took me seriously.. I ended up in the hospital for a week, got IVIG and then finally felt like myself again after being sick for 6 months or so..
I look back at pictures of myself and I just look awful - my face/eyes were so droopy.. like my skin was melting off my face, though to others, I don't think they could really tell much.. though looking back they can.. I am still techincally a mystery (possible LEMS being high on the list, as is MG), but I get IVIG every 3 weeks.. I do have the eyelid thing in the morning.. it takes me a few trys at blinking before my eyelids work, same with breathing muscles and well all of them.. I look just scary with the droopy eyelids during an exacerbation first thing in the morning...

I used to tell the drs who doubted me, that the best case scenario would be that it was all in my head right? You can just give me a pill for that...... but turns out it's not just in my head!

Good luck, Glad your getting testing at least!