Reply To: Undiagnosed – unusual deterioration course

I was initially diagnosed with GBS in February 2016. Throughout my progression, I relapsed a few times and lost some mobility again after regaining it back. They did more testing and diagnosed me with CIDP in October 2016 and started me on Prednisone (corticosteroid) in addition to my monthly IVIG treatments (5 day course). It all definitely helps. I’m fully functional now, just have trouble with stairs and some tightness in my legs. Yes, be very assertive. I feel like they’ll take you more seriously when you’re constantly on top of them and making sure you get the proper treatments asap before things get worse or become irreversible. I feel like a lot of people in Florida have trouble getting proper care because they are oftentimes just brushed off like it’s nothing serious. Ugh. Here’s to hoping that’s not the case with you and that everything goes smoothly!

Jamie