Quote:
Originally Posted by kmeb
Hi - congrats on getting the IVIG approved again! I'm sure a few of us will post - I had home IVIG for year and a half every week - an agency that did a lot of it - but the patient needs to be really on their toes too!!!!! I had printed out a file for myself about IVIG administration, etc.... and some of the nurses actualy asked for copies of the articles for themselves....!
Thats good the agency was up front and passed on your case - hopefully you will get a great nurse - it helps! I'm a tough stick too - I found that using a little microwave heating pad on my arm for about a minute before sticking make my veins really pop - and much easier to stab.... I'm happy that you are hoooked up with IG Living - they are super helpful and you can always e them with questions etc too! (even things like keeping your own log of ivig labels with lot numbers etc is important 
Also, dont worry about using the wheelchair - if it helps you from getting hurt - thats whats most important - I try to hang on to walls and use walker or cane inside - but always use chair when out - just too much of risk... I fell out of the shower a while back and my head broke my fall - major and continuing damage to my jaw, teeth, etc... I let got just for a sec of my shower chair and thats all it took..... I find when out I can zip around when out and not worry about falling is a very good thing! And going down hill can be fun!
Hang in there - Dahlek knows quite a bite about IVIG - as others too -feel free to ask any questions...
Feel better  |
thanks (again)
hoping this works ; in past 6 yr of getting IG--when/as insurance approved--I culdn't honestly report improvements. my neuro still feels IVIG is THE treatmt. Dx: CIDP--has been questioned by others--who may not know as much about conditions-- Dr B calls auto-immune mediated polyneuropathies- Sensory-
"variants"-- challenge 'clear' DX as do overlapping and concurring conditions.
will see what neuromuscular specialist says at July appt. meanwhile, trying to hang in --using wheelchair , when/as can--when go out but in home, accessibility & safety issues, esp. Bathroom. I also had fall like U; so sorry. Head injurys can be devastating & pervasive, w/ visible & "invisible" complications
but any trauma seems to cause more problems.
Muscle biopsy resulted in problems & Sx that look like RSD/CRPS
Knee injury also complicated--fracture, deep brusing & edema in bone--more reasons for using wheelchair as well as new & worsening SX-- esp. progressive weakness in legs . Preventing more falls & injuries is imperative.
thanks for advice and tip about heat pad; will try-- hope will get a good nurse too
I will ask more questions --about IVIG , etc. Trying to learn all I can.
answers, advice, support & other info much appreciated
wishing ALL the Best