I'll try not to ramble too much as it's been forever since I've been on here.

I've had MG since 1995 but had my first IVIG infusion in 2005 and since then have continued that as part of my MG treatment plan ever since. It's been a while since I received multiple treatments over several days because for some reason now my MG responds very well to a single treatment once every six weeks and that's they way I've been doing it for years. Why it works like this for me I have no clue except that as with MG, every person is different and treatment plans can vary from patient to patient. My doctor and I both feel if it works then why mess with it? It's not like I am new to this disease.

Well, I get a letter in the mail from my Insurance company who now states that I can no longer do it this way because according to research, IVIG cannot be administerd in this way due to case studies. It is to only be used over 3-5 days in periods of exacerbations therefore they will no longer cover my single infusion every 6 weeks. They say I am now "stable" and there is no use for them any longer. Newsflash... the reason why I am feeling better is because I am able to receive one infusion once every six weeks. Again, why this works for me I have no clue. I had actually planned on stretching out my infusions to 2 months and then hopefully 3 and then 6.

My doctor is going to respond to the insurance company but won't be able to do so until he gets back from vacation on August 19th. I'm actually on an extended COBRA coverage insurance plan because my husband who lost his job TWO years ago still hasn't found one

Anyway, I was wondering if anyone here has their IVIG infusions given to them in an unorthodox way such as I and if so have you had your insurance company give you a hard time about it? I'm at a loss as to why after doing this for YEARS they are now coming up with this crappola about it no longer being covered.

I'm finally seeing the light at the end of my dark MG tunnel which occurred back in 2005 that landed me in the hospital 3 times in 6 months and I shudder to think about going back there if my unorthodox IVIG infusion isn't covered anymore. Already on SSDI for MG and would hate for something to change in regards to that because of an "Insurance" decision to stop my IVIG coverage.

I'm done... sorry that it was longer than I wanted it to be

Any input is greatly appreciated.