Have you written an appeal to your insurance company yet? Is plasmapheresis a possibility for you? That's what's kept me going. It's been awhile since we last spoke, but I'm now doing plasmapheresis every other week and while I'm nowhere near normal, I'm much closer than I was before. It's keeping me reasonably active and breathing well.
I get that plus 3,4 Dap and mestinon.
Have you been rechecked for VGCC antibodies. I just had another single fiber EMG in December that showed abnormal and blocked nerves. This was my first positive EMG since diagnosis in 2013. I had the VGCC antibodies already.
If they think you have LEMS, would they consider a trial of 3,4 Dap?
Have you seen a doc familiar with LEMS?
Doctors have to be certified to be able to prescribe it, though, since it is not FDA approved, but given on a compassionate use basis.
Let me know if you need help finding a doctor with prescribing privileges.