Lollipop, Do you have a CMS where you don't have enough acetylcholine, don't have any at all or have too much?
If it not enough, it is like MG but the cause and treatments are different - as I'm sure you know. Mestinon is the main drug used but there is something else called 3,4-DAP that is also used in some CMS's. Do you have an expert following your care?
Coffee, which has caffeine in it, can really be a boost for people with not enough acetylcholine. It does the same thing Mestinon does, although I think it does it in a slightly different way (my opinion). Caffeine and Mestinon are both cholinesterase inhibitors. They keep the enzyme Acetylcholinesterase from "eating up" acetylcholine so it can stay in the neuromuscular junction longer so we can use more of it.
The nightshade foods do the same thing (potato, tomato, peppers, eggplant, tobacco).
And the some of the same things, like being out in hot weather, can make the CMS's worse. Heat increases that enzyme in the body. So, if you have a fever from an infection, that can do it too. Anything that increases the body's temp. Even exercising.
I hope we can at least give you some support. CMS is like MG's cousin! Yes, the cause is genetic and not autoimmune but a lot of the symptoms are the same.
Frankenstein, If you're still out there, how are you doing?