Glad to hear yalls IVIG is helping!!! It really is amazing how all of this works, and how apparently mysterious it still is to the medical community- makes me realize even more how important all medical research is!!
I got my musk results today- negative.. but nerve/punch skin biopsies show neuropathy, and autonomic testing showed cardiac involvement - so who knows what I have ha! I now have the diagnosis of "inflammatory and toxic neuropathy"
I will be 3 weeks out on my IVIG tomorrow - and the last 2 days made it REALLy obvious to me just how much the IVIG helped! My speech has gotten worse, every muscle shaking again and swallowing odd again.. plus my right eyelid and below eyebrow is droopy! I'm not on any daily meds, but they are going to plan IVIG every 3 weeks, and add steroids or cellcept/etc to it if needbe .. So we'll see!! Is it normal to feel the IVIG "wearing off" like this? My body is wiped out suddenly!
GOod luck to yall!