Reply To: Newly Diagnosed

October 31, 2013 at 2:26 am

in what way was the emg abnormal? The needle emg- what did it show? was the Ncv normal? People with ALS don’t have elevated protein in their csf but with neuropathies they do of course. , plus if you don’t respond to IVIG alone there are other options – immunosuppresants, Plasma exchange/pheresis .. Do you have numnbess/tingling etc? My tests didnt’ fit with CIDP perfectly either, but apparently my symptoms, post viral and post partum onset etc, they did IVIG and the first treatment after the loading dose- 4 days later i was almost back to my old normal… now it’s on and off, but I’m hoping you have great success!

Remember drink lots and lots of water before and after your infusions and tell them to watch the rate.. Go slow – if you have a history of migraines/headaches or are a female then watch the rate even closer those first few infusion.. Good luck, hope you get the IVIG set up soon- what a pain! Keep us updated!