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Old 05-31-2008, 12:39 PM
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default There must have been something else

To get you into a 'trial'? Any signs of "immune" issues to go with it? Or muscular dysfunction?
No reaction doesn't mean it won't kick in! Sometimes, for some folks it can take 3-6 months of infusing for the effects to start working. Trying it out for 3-6 months IS a standard kind of approach from all I have read. Just a 'one-time' kind of treatment tho, I would be suspicious of..
I was lucky that I felt it working on the second day of the first round? But there were months tho later on, when I was infused with brands of IVIG different from my prescribed brand and during a several month period...I really wondered WHY I was doing this?
With that in mind, DO keep a record of what brand and the dose amount and also the dose rate each and every time your husband gets infused. Now I have been consistently on one brand and no ill effects and only benefits.
I DO understand about the hand weaknesses! When I first came down with my issues, it took two hands in a death-like grip to get any food or liquids into me! And lots of accidents! Not graceful at all!
Just THINK POSITIVELY? That the second time will be the 'charm'!
As for the new pains? Yes, that could be the nerves doing what I call 'waking up'? [It can either be healing or just re-activating] This combination of new 'feelings' can be very disturbing, especially given all he has probably gone thru. New, different feelings on top of all the others that got you both to where you are are SCARY at the least? Think: Waking UP...GOOD! It's kind of a brain-washing thing, but the hope helps keep the sanity to a degree....Being sane is useful.
The docs will probably be taking lots of blood tests over the next month...before and after infusions. See if you can get copies of these and there are sources some of us can refer you to to help you 'decipher' what all they mean.
OK all said and done? When is his next infusion?
Good hope and things to happen!!! 's!! - j
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