I was diagnosed with GBS around the 23rd of March last year, just before my 19th birthday, and my recovery so far has been fine. Recently my residuals or flare-ups, whatever you call them, have been getting worse. This past weekend (15-17) I was wheelchair bound due to not being able to support my own weight. I’m wondering if anyone else has experienced this kind of dramatic shift in recover and if so, what advice you have for me.
This whole thing has been pretty freaky to me so words of encouragement are also appreciated.
I hope that you are feeling better. I was diagnosed with GBS in March of 2013 diagnosed with lumbar puncture and EMG. I was treated with IVig and released from the hospital.
A few months later I started experiencing a return of symptoms. My doctor at the time didn’t listen to me and dismissed my renewed symptoms as not that serious. I waited a little longer and then decided to go over the doctor’s head.
Within hours of a new EMG, I was back in the hospital undergoing another round of IVig. I have since been diagnosed with CIDP and have had one more flare up.
This is not meant to scare you or imply that you have CIDP. You and only you know what your body is trying to tell you. You need to be your own advocate. If you are experiencing a renewal of symptoms so strong that you need to return to a wheelchair you probably need to push your doctor for another EMG test.