I laughed out loud when your neuro said that he didn't want to give you any other meds due to their "side effects," but gave you steroids! Steroids have more side effects than most other drugs do and have the potential to cause diabetes, bone thinning, cancer . . . the list is long.
Most MG experts do not use Timespan during the day, only at night. When you're awake doing things, you might need to adjust dosing from 60 to 75 mg., just as an example.
You should NOT be mixing Timespan with other Mestinon. I know that there are some MG patients who do, but it's not recommended due to the possibility of a MG crisis. Overdosing on Mestinon can cause what's called a "cholinergic crisis," where you get too much acetylcholine.
A MG crisis is where you don't have enough acetylcholine, or what I call muscle gas.
I highly recommend finding a meditation expert to handle any anxiety (or OCD). It's amazing how that can center you and help with that. Of course, a good psychiatrist for an evaluation does help, too, as long as they don't think that drugs are the only answer!!
And, frankly, I think that what you were doing on Google was like a dog with a scent. You knew something was wrong and you were on the hunt to figure it out! We all know what that feels like. AND you were right.
Always trust your instincts.
The only thing that really helps with double vision are steroids and other immunosuppressants, unfortunately. Mestinon is only a helper drug, to get your muscles more acetylcholine, and does not affect the underlying autoimmune mechanisms that are creating the antibodies that are attacking your neuromuscular junction/muscle receptors.
Please have a conversation with your primary doctor about steroids. Neuros these days only like to use them for patients in a crisis mode (which you might be in). But then they do a high dose of IV Solu-Medrol for a day and then follow up with tablets AND a taper schedule. Too many neuros have had MG patients who can't get off of Pred and have serious side effects.
Time to find someone else to handle boxes! Your MG is unstable right now. Basically, that means that you are on the verge of a MG crisis due to how weak you are. Until you get that under control and have that conversation with an expert, you HAVE TO take it easy and not push your body. Seriously, this is a potentially dangerous situation.
When breathing gets worse with MG, the pulse increases. That happens because the O2 usually goes down and the heart is pumping harder to get us oxygen.
I have on oximeter to track over time how my O2 is doing. Don't wear one all the time!
It can cause electromagnetic damage to your fingers/nails if you do that. But it's a useful tool to check how your O2 is when you are weaker. If it's 93% or below while sitting, it will be lower while sleeping. And you can't tell how low it will go. So, at that point, it's time to seek out more help in an ER, if you are also much weaker, can't swallow well OR breathe well. You don't have to have all of those things going on to need help, only one.
I think you have good instincts, but you do need a good neurologist. And a good pulmonologist. And please don't hesitate to go to an ER.
I put some PDFs below for you to look at.
You can get through this! Just listen to your body and take it easy!
Annie