I'm glad your doing ok Limpy! Wouldn't PEX be even more expensive than IVIG (insurance co like it even less)? did the IVIG not work for you? I cant' remember!

I had the VGCC ab checked in the beginning of this. .. so it's been probably 4 years at least since last check. and when I asked about the SFEMG, everyone said that there was no need since we found a treatment that works, why keep on trying to test.. which i had a seriously hard time with, since i wanted concrete answers for the longest time.. until this past year when I finally became ok with no solid diagnosis.. and then this... now THEY need a more concrete answer I guess and are just ignoring the expert on it!

I don't know if they would do a DAP trial at this point? we might have to start getting creative. What are the risks with it? I assume my Doc is familiar with LEMS.. I'm at the neuromuscular University center.. so i would hope so! They seem to be familar enough with a lot of obscure things.. but how many cases has he had to be exact, i have no idea!

As of now my breathing is ok.. but things like going up stairs, getting up off the toilet (TMI i know).. lifting my arms, pushing a public bathroom door open.. and anything with endurance (even smiling) is diminishing faster than I thought it would. Tonight would be my 2nd dose of weeky subq ivig I will be missing.. so I am officially one full week behind.. it's shocking to me that I didn't have more reserves than this...

I have not written an appeal personally yet, My dr is doing an appeal.. does it help for the patient to do one as well? I was going to also do a certified letter to that specific doctor that declined it.. (he may get a thousand a day).. but hopefully he would read it and at least kind of understand the impact it has on my life without it.