Hi, eyejoin. Welcome to the forum!
I'll answer your questions first.
1. Yes, the SFEMG requires your participation in contracting muscles while the doctor attempts to find any "jitter" or blocking while you do that. It's not necessary to do that for a regular EMG or RNS.
2. Yes, do post a before and after. If you can take the photos in the exact same light, exposure, and background, with the same head tilt, that will really help.
3. The only diseases that cause fatigable ptosis are MG, LEMS, and the Congenital Myasthenic Syndromes. Fixed ptosis has other causes.
4. If you're having that many generalized issues with strength, AND you have MG, no way is it only ocular MG!
In fact, they have done SFEMGs on the limbs of people who allegedly only have ocular MG and have found positive test results, even if there is no obvious clinical correlation.
5. MG will persist in drooping your eyelids, even with surgery. There are many muscles in the fact and you can't lift them all without looking like your face is frozen!
This has to be a separate topic: How to deal with neurologists?
They can be quite arrogant. If you don't have an MG expert helping you, the neurologist might have only read that two page spread in most medical textbooks on MG. And they might only have had a handful of MG patients. Doctors, in general, don't like to look or feel stupid. Who does? I personally think that neuros should be resolved to feel stupid, because the human body can always surprise a doctor and there's no way they could ever know everything!
Do you have an MG expert? If you said what area you live in, someone might be able to point you in the direction of a good neuro.
It helps if you bring someone with you to an appt. They can back up your "story" to the doctor. Or take notes for you. Or advocate for you, if you're worn out.
Being calm and matter-of-fact with doctors helps. You know, not overly assertive but not a wimp either.
You seem very methodical, the way you wrote your post, so that's good.
Beyond that, you really need an expert.
Ptosis from contacts? Oh, brother, what nonsense. Do contacts cause your legs to feel like lead weights, too? Talk about illogical.
Did you see a neuro-ophthalmologist? They are the ones who can specifically say if your ptosis is fatigable. They do very specific tests to do so.
You say you have blurry vision, and not double. You might not realize that you do! Take your pointer finger and hold it in front of your eyes about a foot away. Then, keeping your head still and only moving your eyes, move your finger from side to side. Do you see double at any point in the field of vision? If you do, does it go away when you close one eye?
MG ptosis is caused binocular, and when you close one eye, it goes away. Why? Because the muscles of each eye do not get weak "equally" and, therefore, focus differently on objects, causing the DV!
Can you list what the results of the antibody tests were? Both the results and the ranges?
Don't kid yourself into thinking that if you have MG and are ethnically half Chinese that MG will stay mild!!! It doesn't sound like you have mild symptoms at all. MG is highly unpredictable, and can vary from hour to hour and day to day.
Are you short of breath? If you are, that's one more bit of "proof" you can document. See a pulmonologist who can do full PFT's on you. That would include MEP (maximum expiratory pressure) and MIP (maximum inspiratory pressure). Basically, the tests are specific to neuromuscular diseases and shows how you are doing at breathing air in and out.
You should know that heat can make MG dramatically worse. Stress, lack of sleep, infections, surgery (like that eye surgery), etc. can make it worse, too. Certain drugs can, too. The eye drops optometrists use contain Atropine, which does the opposite of Mestinon, one of the drugs used to make MG better.
If you ever can't move well, can't breathe well, or can't swallow, that is a 911 type of MG emergency. MG can go downhill rather quickly and you need to be in an ER at that point. Don't be stubborn and drive yourself in.
Do you know if they ran both the Acetylcholine and MuSK antibodies? If you aren't positive on them, that does NOT mean you don't have MG.
A lot of MGers have thyroid problems, too. I have MG and celiac disease. I hope your doctors will realize that you can have more than one thing going on and not attribute all of your symptoms to one disease!
Let us know what else you need, okay? To me, it sounds like you have fatigable (instead of static) weakness. No matter what the cause, it needs to be defined and treated!!
I hope you get the test results soon. In the meantime, take things a little easier so that you don't get worse.
Annie