If It were ME? I’d go back to Boston? Get orders and …
recommendations for docs who will FOLLOW THEIR orders!
I can only recall one other instance [ in the 7 years I’ve had CIDP] where, a doc orders a loading dose and then says ‘see you later in a while!’!!!!? Duh?
So either Try and make [right?] the neuro who’s giving you the IVIG on such as schedule to talk to Boston? Or simply have Boston call and say what the ‘fudge’? Boston probably sent a letter to your neuro’s practice…get a copy-ask for it! Having that helps YOU lay down terms in terms of how you should be treated- or agree to be treated. If your neuro isn’t following recommendations? Please, find someone else! The latter [Boston calling your neuro] mite be best, as little dogs want to be near or run with the big ones…. Peer status and all that!
While that sounds a bit crass? It’s reality. Sigh.
Are there any other neuros in different practices in your area? Worth a try, but let the big dogs lead the way!
By the way? Your onset, age and everything sounds like ME a few years ago! Please fight for the better treatment you deserve and get it while you can! That’s what I did and I’d been lucky. I hope and pray you are too! And soon! Hope and heart! Let us all know how it goes, please.
Keep faith and strength [what little you’ve got left] and go kick back ends! :rolleyes: