Hello Everyone. Newbie here. I'm rather verbose so I apologize in advance and will try to keep this short. I have Sjogren's Syndrome which has manifested itself in small fiber/ autonomic neuropathy. Forgive me if I am in the wrong place, but I am told that these are peripheral neuropathy??? I am very confused over the whole thing, even though I've had this for at least 5 years now.

The pain has been controlled so that I do not want to throw myself into traffic any longer, but now I am losing sensation in my extremities. Two sprained ankles in the past 6 months, dropping things, etc. So I finally had my first IVIG treatment last Weds and I have some questions about what I'm experiencing and what I might expect to experience.

I received Gamaguard 70 grams (if grams isn't right IDK what the measurement is, but it was 70??) Over a 2 day period. The first day they had me there for 6 hours, but I got a mother of a migraine that night, so they slowed it down and gave it to me over 8 hrs the next day. I was twitching the entire time. Almost like when a Looney Toons character gets electrocuted. Not as violent, but that's what I felt as though I looked like. I have been twitching like that every night since the first infusion (3 nights). So basically it's as though I'm in a Sjogren's "flare" because this what happens when I'm flaring.

When I got home, I could not believe it, but I could feel my feet and legs!!! That fast!! I never thought I'd be happy to feel my bones aching!! It was like that after the second day of treatment as well and the next day, but I actually felt much more. Today is the second full day after the last treatment and the numbness is returning almost full blown... just as fast as it went away. Is this normal??? What does this mean?

Any experience, input, advice... anything, will be greatly appreciated. Thank you all! So glad to have found this forum!

Peace and blessings,

~Annie