thank you, Arturo! I really appreciate the support and very sound advice. I had gotten complacent after good treatment and no episodes in 5 years.
Just for information purposes, I'll share that it wasn't until after I realized I was having an episode that I realized it actually had been going on for at least 72 hours, probably longer. My thighs had been feeling "puffy" since at least the Friday before (definitely Saturday - I mentioned it to someone). Then Sunday night, I scratched an itch on my ankle and noticed it felt swollen. It just didn't dawn on me that I was having an episode until I got in the bath Monday night and saw my very blue and swollen legs. Treatment started Tuesday at 6 pm.
But my typical episodes (before IViG) seemed to have a slow, gradual build-up that lasted something like two weeks before my symptoms got really serious, so maybe the window of time for administering IViG is different in my case.
Good news: Back in 2014, Dr. Druey gave me a kit full of vials -about 13 - to get blood drawn to have sent to him if ever I had an attack, and I was able to have that done and deliver the samples to him. He said it had been difficult to get blood samples from people having an active attack. He hoped to be able to compare to blood taken while NOT having an attack and try to find out what the difference is.
I'm sure you also know Dr. Druey has found a difference in all 10 skin biopsies he's been able to analyze from SCLS patients. He says all 10 of them react differently from the "normal" to histamine. I am going in to NIH next month to add a sample to his skin biopsy study.
Another positive to report: the ER at Anne Arundel Medical Center gave me no grief about the treatment. I walked in and told them, "My doctor said to come get an IViG infusion right away", and they said "OK", and did it (after 4 hours of typical ER processing). I'm sure it was so easy for me because I'm in their records at AAMC from the episode that put me in their ICU, which was where I got diagnosed. All in all, I am very blessed and grateful.
It must have been heartbreaking and at least a little frightening to be there as two different people passed on from an SCLS attack. How courageous of you to be there for them....if I'm remembering what I've read in the past correctly, you were friends with them too. You are in my heart and prayers.