Kathie, It's very reasonable to call your neurologist's office and ask what your dosing parameters are - or how they could change.

My body does the best when it gets a consistent dose of Mestinon. I take 90 mg. every 3 hours round the clock. Sometimes, I might take less but not by much! I am allowed to take 100 mg. if I'm out running an errand, since I usually get worse then.

Sometimes it's the dose amount that gets increased and sometimes it's the frequency of the dose. You sure don't want to end up with a cholinergic crisis by taking too much though!

Mestinon usually kicks in anywhere from 15 - 30 minutes and wears off about 2 hours later. It's annoying to have to take a drug so often but I'd be completely useless without it.

Quandry, I honestly don't think it's the modulating antibodies that are causing your issues. It's simply MG that is. Though they haven't fully investigated the differences between the antibodies, in my opinion.

http://www.clinchem.org/content/56/6/1028.full

And to add to the confusion, you can have a lot of antibodies and less severe MG and vice versa. It's always best to go by how weak you are or how much weaker you're getting. You might want to put a call into your neuro too!

http://www.ncbi.nlm.nih.gov/pubmed/3479935

Though they do have some clear explanations for each antibody.

http://www.aruplab.com/guides/ug/tests/0099521.jsp

I don't know why I only have modulating antibodies either.


Annie