Hi,

I will try and address your concerns. Since you don't have a confirmed diagnosis, I would say that yes, the chances of the insurance company eventually questioning your use of IVIG is very real. Each and every year I have to go through a mini (or sometimes full) appeal process to keep my supply coming even though every month my infusion company documents my progress/stability and my neuro also notes in during treatment visits. I also have very well confirmed MG of 14 years! I suspect this problem will become worse with the new healthcare changes. I will go so far as to say that within a few years, IVIG will only be allowed for in-pt crisis situations. That's just my opinion, however.

Last year, an acquaintance of mine who has both MG and MS was denied for 5 months. She couldn't understand why that was happening and finally discovered since she had it documented that it was using to address the MS as well as the MG, the ins co said IVIG is experimental in MS, so they denied her. It took A LOT of work to get that straight. One "check" in the wrong box is enough to cause an issue.

I get offered a "case mgr" all the time through my insurance, since I am so "complicated." I've never taken the bait on that because I simply don't trust them to truly convey what I am saying and keep the facts straight. Nurses/case manager's have a lot of power. I prefer to trust the ones who are really working FOR ME--my neuro and my infusion company, and most of all, MYSELF. I know a lot of people use them and are happy with them, but just know that you don't have to if you have any of the concerns I outlined above.

I'm not trying to be a Debbie Downer, but I can tell you are worried, and wanted to make sure you can see both sides of the coin. FWIW, any time my neuro has had to help with my appeals, the IVIG is reinstated within days.

Good luck! Keep us posted.