I agree totally with Dick….

September 18, 2009 at 11:13 pm

Try to understand, that so few folks ever EXPERIENCE what all we go thru from the beginning to the now! I’ve a family relative w/MS who ‘didn’t get it’ until I dug deeper and cited that dreaded ‘demeyelination’ word! W/MS it occurs in the BRAIN end path, with US it starts at the extemeties. THEN we did not have to share pain stories!
I USED to get IG infusions in a cancer infusion center, and I only got any ‘OH DEARS!] when I’d informed them that I had cancer as well. I’d been going there for over 3 years and not one person had a CLUE about CIDP? Yet, those with MMN were truly sympathized with and catered to. I really felt cheated by their care there.
I no longer go there as I’m now getting treatments at home. I must say that time-wise and safety-wise I’m better off with home treatments as I: a- don’t have to drive while I’m still under a multi-tylenol/benedryl dose’s and b-I truly believe that IF, I should get any infusion reactions? I can get to the hospital ER and get needed treatments faster than if I were in the hospital itself. Scary but true thought. Treatments at home take less time as well, as I, and ONLY I am closely monitored for reactions [tho none have occurred] and I’ve not had to wait four hours for a hospital pharmacy to MIX my IG for my X-o’clock appt! Far, far less stress and wear and tear on ME!
As for your hospital? Find out the name of your brand’s IVIG and call the IG company and ‘hint’ that the infusion center where you get treatments ‘isn’t quite as aware about IVIG and what it’s for….’ I’ll bet that center gets closed for a one-2 day ‘education/training’ session! It is in everyone’s best interests to be as educated as they can about what all is being done to them, and that those who are in the ‘doing’? Know well as well! Good things soon!