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Besides being necessary to find a real MG specialist, it’s important to find one that knows how medicines work, not just one who prescribes based on textbook doctrine. For instance:
Mestinon is a band-aid, not a solution. It merely amplifies acetylcholine nerve communication to affected muscle cells. It does not reduce the autoimmune attack on the muscle cells. It will also overamplify communication to non-affected muscle cells, including smooth muscle cells in the gut that use the muscarinic acetylcholine receptors instead of the nicotinic acetylcholine receptors. Which is great if someone also has gastroparesis and suspected mAChR antibodies as well as nAChR antibodies, but can cause gastric upset if the gut muscle cells are unaffected.
MG should be viewed as a part of a spectrum of autoimmune diseases that all have the same thing in common – mis-programmed plasma cells churn out auto-antibodies that target something in particular. Prednisone and DMARD drugs (Methotrexate, Cellcept, Azathioprine and others) work to interfere with plasma cell programming. The newer biologics are more of a “smart-bomb”, they target more specific points in the process that either program plasma cells or the auto-antibody attack itself on a cell. I am amazed at all the different biologics being applied to MG research but access to those by MG patients are very limited.
At this point, though, there isn’t anything that specifically targets the MG antibodies themselves, sort of an anti-auto-antibody, and there are at least 7 different auto-antibodies discovered to date (I think) that will interfere with nerve/muscle communication and cause MG symptoms. We have a long way to go.
On a more mechanical level, IVIg adds healthy antibodies, and I don’t think doctors know why this works. Plasmapharesis removes antibodies out of the bloodstream, including the bad ones.
Then there is the “diabetic” medicine Metformin. It’s actually an immunosuppressant. Immune cells need glucose energy to make antibodies, and Metformin shuts that down. (So do special diets like keto, which try to avoid eating anything that can be turned into glucose.) I’ve seen research articles going back 10 years about how piggybacking Metformin onto other autoimmune treatments could make them more efficient, and I just saw a new research abstract this year that suggests Metformin might also help with MG therapies (but I don’t have a subscription and can’t download the whole thing).
Finally, it took a thymectomy to get my daughter off of Prednisone. A whole bunch of other non-MG, undiagnosable symptoms have also been resolving since then, weird. As a long-in-the-tooth programmer, it hit me that the Thymus gland essentially boot-straps the adaptive immune system during childhood and is supposed to go off-line at puberty. Daughter had thymic follicular hyperplasia, essentially her thymus was still active and bloated, churning out programming instructions for God-only-knows-what to the immune system.