Reply To: Droopy Face!
Hi BNy(Kelly) can I call you Kelly? Anyway, About the autonomic issues, we had urinary, bowel and breathing issues. Palpitations were an issue too. Once we were on the loads for a while everything went away, about 6 months if I remember. There are no issues now5.5 years later. The eye part sounds like miller fisher variant, the rest could be that you just aren’t getting enough ivig. Not to throw wrenches in the pot, but lupus does have organ involvement and lupus does respond to ivig. They are currently running studies on ivig for lupus and cidp. Do you have the typical red cheeks and red on the bridge of nose. it is called the butterfly rash. Any disc type infections on your face, kind of like a big boil? Sarcoidosis also has organ involvement. I think lori brought up if you have a firm dx yet, do you? How about the spinal fluid protein level, we were 65. Regarding the lessions on the second mri. People with cidp do sometimes have lessions. People with chronic headaches show lessions, do you have headaches? Personally, I think your symptoms sound like cidp, maybe miller fisher variant. I think you just need to find the ivig schedule that works for you.