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Myasthenia is considered to be an incurable, progressive (but highly variable) condition. One of the often quoted lines is “most people live mostly normal lives”, which sounds great but covers everything from “take your mestinon and go about your life as normal” to “you were able to shower and dress yourself today like most people, even if you had to rest after that”. It’s incredibly variable but with modern treatments like immunosuppressants and mestinon/pyridostigmine most people do really well. There is some identified time period – I think 2 years – where if it stays only affecting your vision it is extremely likely to stay just there and not progress to generalized MG.
I have seen the same or similar comments about disease severity that you mention, that the first two or first 5 years are the worst. I think there are two parts to this – my own experience was like yours, started with double vision but I very quickly ended up in the emergency room with trouble swallowing and a whole bunch of other issues. Some people progress very quickly at the beginning and many of the treatments take some time to take effect. The second part of that first couple years is the mental adjustment to new limitations – “I can’t drive today, the double vision is really bad. I’ll try tomorrow”.
The time between flare ups – and even what you consider a flare up – is very different and I think hard to predict. Some people are very affected by stress, some people may have flare ups if they catch a cold or get sick, some people just seem to get them from time to time with no clear root cause. You may be able to push down a flare up by increasing your mestinon or your doctor may change up your immunosuppressants. Unfortunately there isn’t one clear answer, that’s something you’ll figure out in partnership with your neurologist or doctor over time.
A lot of people do benefit from changes in lifestyle. Many of the doctors seem to recommend Mediterranean-type diets and they all encourage regular exercise and stress management.
I think you’ll develop a sense over time that it’s time to hop on the mestinon or take a little extra. My first experience with MG-related double-vision was at highway speeds at rush hour coming into the sun after going under an overpass so I didn’t have any warning of my first experience either. A couple years into it, I have a pretty good idea if I missed a dose or if I should be thinking about taking some more now. I’d say watch for blurriness first – that’s likely to be right on the edge of where you brain can keep a single focused image. As time passes or if you put your eyes under strain (in and out of the light, extended reading, etc), that’s the point where I start to push into double vision. Also, once your MG is controlled if you still have double vision then there are things your opthamologist can do with prisms in your glasses to correct it. You’re very lucky to have an eye doctor who knows about MG, hang on to them!
If they do find they need to take out your thymus, some people experience essentially full remission once that’s taken out. It can take up to a year once it’s taken out, and it’s not guaranteed (it didn’t help me) but as I remember it, if it has to be done, it has the best impact in cases like yours where it’s early and mild.
Best of luck with your doctor visits!