Debra, I'm very sorry that you tank like that. I'd like to go out and do those normal things too. An Art Festival sounds wonderful. I can't even do the Minneapolis Institute of Arts, which is inside and air conditioned!

Have your doctors done a metabolic panel before and AFTER having IVIG done? What about serum osmolality (shows how hydrated you are).

When you have an influx of fluids, whatever amount of sodium you have in your body becomes relatively less in quantity. You can get hyponatremia (low sodium). That's a fairly dangerous situation. And it's hard to combat too. You can chew on a few potato chips while you are having IVIG to increase sodium (sodium and potassium work synergistically together) but too much sodium will simply increase how much fluid you retain.

Talk all of this over with your primary doctor. You need to make sure that your heart and kidneys are in good shape. IVIG can cause problems if they aren't. IVIG can also cause a buildup of albumin. It can also make circulation "thicker" and, in some people, can cause blood clots. I'm not saying this to worry you but you need to be aware of all of the side effects of IVIG so that you and your doctor can figure out what is going on. Low blood pressure is "normal" but not that weakness you describe . . . unless there are electrolytes too high or low during or after the IVIG!

I'm glad you had a teachable moment. Not everyone is open to that. I can't help myself when someone says casually that they're so tired and have numbness or tingling in their extremities - I have to bring up the B12 thing.

I hope you'll get better soon. If you go downhill that fast and that far, you know you're a few activities away from a crisis!


Annie