Hi again. =)

Thank you for the warm welcome. I want to respond here on this board as well for continuity and because I'm not sure how much you share on the other board.

I am very sorry to hear about the damage they feel has been done to the dorsal root ganglia. Are there any treatments or therapies that you're still pursuing? There's always hope. I'm certain that you've heard this already though.

I'm going to call the IVIG office today and see, but I'm fairly certain that they did not give me steroids on the first day of IVIG because I have Cushing's syndrome and I'm on a tapered dose of steroids. My rheumy and I are of the same mind with taking the steroids, and that is only if if it's absolutely necessary with no other alternative. I'm thinking that he assumed that the small dose (9 mg.) that I'm on, would cover it. The second day is when the nurse told me that he had ordered it for my I.V. Again, it would make perfect sense though, if I had steroids that first day.

By the way, if it were to be inflammatory, would it not be the SjS then? This is what we've been blaming it on. In fact, rheumy dx me with both SjS and PN based on symptoms alone, saying that I clearly had inflammation, as "such and such was present." This was before QSART and TILT Table came back positive but i still, to this day, always have neg. blood work for inflammation. He says "Look! You're inflamed!" Lol

The twitching is a normal flare symptom for me, only these were definitely brought on by the IVIG. They have been slowly diminishing since Saturday night, which was the day after the last treatment.

I did begin keeping a journal which I need to update or I'm going to mess things up for sure, so thank you for reminding me. Okay, you don't need to post on both boards.=) Like I said wanted to post here for continuity and maybe people here will know that I'm not so bad knowing that you "know" me a bit.... you give me some street cred. =) Thank you!!

~Annie