Further explanation: The vital messenger compound acetylcholine is used all over the body, not just in neuromuscular junctions. It is in the brain, the heart, digestive muscles, glands and even the smooth or involuntary muscles. Those of us who produce an antibody that attacks acetylcholine and its receptors are at wider risk than many neurologists recognize, and such whole-body antibody action may explain the many unusual symptoms reported by hundreds of MG patients.
In the brain, acetylcholine plays a vital role in cognition, memory and emotion. Several studies show conclusively that MG patients score lower on cognitive tests than healthy people. And low acetylcholine levels in the brain is a condition associated with both Altheimer's disease and myasthenia gravis.
Mestinon (pyridostigmine) works by increasing the amount of acetylcholine in the voluntary muscles, but it cannot cross the blood-brain barrier and therefore does not work in the brain's central nervous system. Donepezil works exactly like Mestinon but also crosses into the brain to increase acetylcholine levels there as well.
Donepezil is FDA approved for use in Alzheimer's but not in MG. Of course it can be prescribed off-label by any physician. Two small scale clinical studies of MG patients show that it can be effective at treating "brain fog" and other MG cognitive complaints. But in about half of the MG patients tested, its action on the central nervous system also showed remarkable whole-body MG symptom relief.
My very good doctor suggests I try it, quite frankly, as a test case. I am inclined to do that but would sure like to first hear from other "test cases,"
A concern we should all have is that pharmaceutical research goes where the money is. Some new MG treatments cost thousands of dollars. But Donepezil's patents have expired, and it is available as a low-cost generic. As a result, nobody has any financial interest in getting it approved and more widely used for MG.
Nearly all the MG treatments commonly used today, including Mestinon, were developed for other uses and later found to be of value in MG. So we need to stay open-minded.