I am glad you are here! But not glad as to why…

June 6, 2010 at 6:46 pm

you are here. I’m surprised that no one has prescribed any physical therapy for you? Being in bed a couple of days, not to mention weeks does reduce your muscles’ abilities to function, let alone function normally. I would definity ask: WHY NOT?
As for IVIG versus other treatments? First I have to ask about you ‘going to try IVIG again?’ Did you have any side effects? Or didn’t it ‘do’ anything? IF it didn’t do anything? It mite be because you didn’t get enough to really work.
As for brands of IVIG? Some folks cannot tolerate some brands at all well because they are either intolerant of some IGg-M or IGg-A components in their IG product.
Most products now have some glucose or sucrose forumla as the ‘liquid agent’ to enable IT to get into you easier. I’ve no problem? But I did when one brand used to use saline as the ‘liquid’…I tasted salt and coppery for many days after infusions. It IS key to hydrate more than you thought possible prior to infusions! I boost it by slugging a small bottle of Gatorade, just to be sure.
Gammunex is the only brand of IG that went thru the clinical trial and approval process at the FDA. Prior to that, all brands were considered ‘off label’ use and many insurances wouldn’t approve it… even tho it’s been used for GBS and CIDP for over 30 years. Go figure?
IVIG works for between 40-60% of the people who try it. Steroids also have their plusses & drawbacks so read up thoroughly on all the few different options we have. As for brands? I react better on some brands than on others! AND, no hospital or other provider should substitute the prescribed brand without letting you know AND let the prescribing doctor know in writing! It’s federal and state law in the US and the tricky part is getting proof. I was substituted brands for several months and I thot I was going crazy, because IT wasn’t working! Once I changed my IVIG provider it made a world of difference!
Good luck Michael! You are young to have gotten this stuff! My heart is with you for sure. Don’t be afraid to ask questions, none are too silly or simple or anything! Go get that PT! It’ll be very HARD work, and you will have to [MUST] learn your limits? But be sure to ask for ‘home exercises’ and be sure the doc prescribing the pt puts THAT on the orders-don’t leave the office without that part. Why? Because at home there are bits of simple exercises you can do at your own pace and not get exhausted in the ‘doing’ like you would at PT. Example: A weight leg lift? Get your own weights [cheap on sale at K-Mart or the like] and at PT they want 20 reps? Do reps of 10 3-4 times over the day…build it up to 15 and so forth. It works and it’s easier to do at home at your own pace. Hope this helps? Let us know what’s going on! These are good people and we all don’t want another to have to ‘reinvent’ this wheel!