Reply To: IVIG/treatment and symptoms

March 1, 2012 at 3:59 am

Yes it is working ๐Ÿ™‚ i felt myself declining in the three months without anything–even the plasma X/C didnt really give me any significant changes. for some reason this ivig worked better than any others—maybe it was because i had the PE a month prior ?? IDK—can’t seem to make sense of this diseaes! i think i will most likely just stick with the ivig–the loading dose every 6 weeks for now. i see my dr in a few weeks and am going to see if i can be on a somewhat flexible ivig schedule—just in case the symptoms kick in before 6 weeks. My symptoms are hard to determine, basically when i decline it starts as numbness increase, when i overdo it it increases numbness–which goes away eventually and if im stressed it increases numbness…so needless to say its difficult to tell when im truely getting worse. i try to give treatments and flexuations in symptoms a little time to differentiate.
anyway….i feel better now than i have since november (thats when i had my last ivig) i noticed when i was walking out of my sons sports award ceremony tonight that i was walking along and talking with a group of people and i wasnt struggling to keep up with then. i have also been having a lot of sensory stuff–twitching, vibrations, minor pain where there was just numbness so i think that’s a good thing.
Im glad kelly is back on here and giving you some info—she has been at this a long time and as some good info. No matter how much i hate having this crap–im thankful every day that it is me and not one of my children–that would be very difficult ๐Ÿ™
i had never heard of ivig,cidp and barely even knew much about the nerves at all before getting this–it is amazing how quickly life can change.
Dont mess around with the whole vision thing—-definitely keep up on that—maybe a trip to mayo for you??? the good thing is they will get all your testing done in a week or so and possibly get you some answers. or if minnesota is too far there have been some other reputable places mentioned on here. mayo was good about getting all my tests condensed into 4 days—they were just 4 long busy days going from test to test.
yes i would LOVE improvement too!!! i really want to run, and ski again—-but at this point i will settle for a somewhat normal walk and to be able to stand in one spot without stumbling, i have horrible balance right now.