Caryn it is hard, but is

Anonymous
May 7, 2007 at 7:15 pm

VERY USEFUL to get these two docs to talk to each other about this concern – why? because they BOTH are looking after you but from very different perspectives…Therefore as your ‘other’ doc is concerned it’s because he is familiar of all the issues of IVIG. Print out the prescribing info of the brand you use and HILIGHT the ‘hepatic-function’ issues and also the side effects, common and rare…Point out to him that the neuro isn’t concerened and that you appreciate his being alert and concerned. The docs will talk to each other, get on similar if not same pages and YOU will benefit. What’s to lose? I see you getting great benefit from all this and your docs appreciating that you are well informed about all this complicating treatment can mean. Count your blessings for such good docs!

I’m interested about the brand of IVIG you are on, I was on a saline based one, [mostly Gammagard] and now I am on a sucrose based one [Gammunex] and for ME I’m finding far fewer side effects [headaches, diahrea etc.] That’s what makes each of us different. I am not diabetic or pre-diabetic that I know of, only prone to hypoglycemia on occasion…which causes similar s/e’s to diabetes but different.
It seems that: Not only is diagnosing our problems, in all it’s forms a demon, but, treating it as well. I think WE are INTERESTING! And, if Docs aren’t interested..then they are the dull ones! Good thoughts!

BTW, tho they don’t tell you, they DO screen for AIDS and Hepatitis right off-from the start…IF it were a positive in any way, they have to tell you. But, reassure yourself, get copies of all your tests…then not only do you know, but, you’ve got all the other good stuff as well to look at and, be confused about!