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Another Crazy LEMS Week of IVIG
Yes, that fourth week going into my IVIG immunoglobulin infusion can get “interesting”. As my friend Dawn reminds me, the life of antibodies we receive through IVIG are good for about three to three and a half weeks, generally. This holds true for me. My IVIG schedule is set exactly 4 weeks to the day on the calendar. So every fourth Wednesday I have my first day of the two day infusion. That gets interesting, because those antibodies I receive may not be hanging around those exact 4 weeks to the day.
And so it was this cycle. I woke up the Monday before the Wednesday infusion with no energy. I didn’t feel well. As the day progressed, I felt a little better, but my hips were weak. That evening I felt the ever familiar crushing fatigue and could barely drag myself to bed. It was the same pattern Tuesday, exactly. Then on Wednesday the “miracle” happens. I get that flood of 45 grams of immunoglobulin and my LEMS world changes as I walk out the infusion center door. All is right with the world, and I feel so much better. The crushing fatigue is gone. Ditto the hip weakness!
So that’s how IVIG and LEMS can be. Crazy! It’s all about learning how to live with and roll with Lambert-Eaton. -
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