LOTs of issues going on here?
First off, IVIG? An INFUSION NURSE should NEVER EVER LEAVE during the entire time you are being ‘pumped’. IF/should a nurse do so…call your insurance company, the state health board regarding blood products and then your neuro-the one prescribing the administration of IVIG…DO NOT call the home nursing agency in this all…It has to be a ‘neutral evaluation’ and not directly from you.
Tho I agree that Home infusion is far easier -after, in the driving home part…The nurse HAS TO BY LAW be there during the whole process. I will bet you BIG bucks that your insurance co is BILLED for a whole INFUSION Time nurse time?
Taking a friend along as an extra set of ‘ears’ does seem to keep docs, especially neuros on a higher alert state in terms of really ‘listening’ to you. Tho if the doc talks to your ‘ears’, and not YOU that’s a sign of a very lazy or insecure doc..in my feelings.
Since you have gone to this doc for more than a while…the one thing I find that keeps them on their TOES is to regularly [yearly or 2x’ s a year] get copies of your files to date]…It might cost you..from my own neuro IT doesn’t, tho from my GP it’s $2. a page…go figger. That way, you get tests, and other reports copies to sift thru and see what all is ‘hilited’ as problems from all your different past tests…who knows? YOU who have an interest in all things about YOU mite actually find real points of concern [to you] that could help in your treatment… Don’t forget docs, don’t catch everything? SOOO….. Take all those tests, and results and go get a second opinion.. It’s really cheap, but don’t go w/another doc from that particular practice. I’d find the biggest best teaching hospital as near as you can find and go there….That sort of peer pressure could help your ‘current’ doc actually test and treat you. Depends on how far you’d have to go…If it’s a hundred miles…well If testing and all couldn’t be done at home, plan a week or a couple of days at first and then a few more at a later date…coordinating this stuff can be a pain…of effort. but usually well worth it in the long run.
I mean, it’s that or a cattle-prod to get things moving? The first plan is far easier in the long run…Hope this helps.