Well, it wouldn’t hurt to ‘ask’?

April 23, 2009 at 1:44 pm

Call the immunologist’s office as ask if he/she see’s CIDP people as well as CVID. Who knows? Might be that he/she does! Then make an appt [if your insurance isn’t the picky type that requires ‘referrals’ for everything and go with it. Explain that you have concerns about your progressions of neuropathies in various areas and how this is affecting your life. That you want to feel really assured that the dosing you’ve been getting of IVIG is consistent with most protocols.
I hope that you have a set of ‘records’ updated on key tests for reference. Tho, most docs prefer to do independant tests on their own…it’s a quirk they have, it seems.
Also, never EVER ‘dis’ any prior doctors! “You aren’t really communicating well”, or that “you are feeling something is missing in either the treatment or the testing”. Leave a door wide open for options.
I found out just not quite too late that second opinions can and do save lives!
Also, check out this doctor’s name on the internet….who they affiliate with, what papers they have written, what medical boards or research they are involved with, etc.
Lastly, many doctors are stingy regarding IVIG due to their prior training. Others are agressive and others somewhere in the middle. For your current neuro? I suspect he/she is not gonna up your dose without some additional input. Maybe this new doctor will get the ammo you need to get what you need.
Nothing ventured [tho tactfully?] nothing gained.
Worth a try, anyhow. Good luck!