Hi, canuckmiss. Welcome!
First of all, ocular MG IS MG. There's no distinction between ocular MG and generalized MG other than what area it is affecting. And it doesn't sound as though you only have ocular!
Most of your symptoms do sound like MG, and the fact that it is fatigable weakness (and double vision), which is the hallmark of MG.
You also sound as though you could have a B12 deficiency. Have you had that checked? It's amazing to me how many neuros miss that!! Did you know that you need B12 to make acetylcholine in the body?
A vitamin D deficiency is also quite common. Ask your primary doctor to do some basic tests!
You might also have celiac disease. People can have more than one thing going on at once.
You don't sound as though you're in good shape. If you become much weaker, can't breathe or move well, or can't swallow, that's the time to dial 911. It doesn't matter if you don't have a diagnosis.
Has anyone checked your O2 level? If so, do you know what it is?
How is your pulse? When MG gets worse, and the O2 drops, the heart works harder to get the body oxygen, which raises the pulse. So watch for that. Know your normal pulse!
Gremlins, eh? That does sound like a B12 deficiency. I've had one and it can cause a lot of symptoms, such as severe fatigue (at all times of the day), numbness or tingling in hands, face, or feet, hypersensitive nerve feelings in those areas plus the lower back, palpitations, bad headaches, and so many other symptoms.
This is not all in your head! What nonsense. You have very obvious, provable symptoms, such as the double vision. Have you seen a neuro-ophthalmologist for an evaluation? That's a great idea!
Seeing a pulmonologist for any breathing issues to more clearly define what is going on is good, too. MIP and MEP are specific neuromuscular disease breathing tests that they can do. They should also look for trends in those tests to see if you have a downward trend!
How else can we help? In the meantime, take it VERY easy. Don't get too hot or too cold (can make MG worse). Keep a phone handy in case you do have to dial 911. Let other people know how you're doing.
I hope you'll get help soon.
Annie