Reply To: Relapse?

July 21, 2012 at 8:44 pm

I got all of the lab results back that were just drawn last Wed. It was Vit D, B12, thyroid, cholesterol, and the crazy STD, all of which came back within normal limits/negative. The Vit D is the one I was concerned about since it was low before but now within range.

I have not been on any kind of treatment since moving to California. All of my GBS/CIDP treatments were in Oklahoma. Once I was “stable” I moved to Ca and got married. That was when I tapered off the neurontin and never saw a neurologist since. That has been 10+ years. When I was in Okla, I did have 2 different rounds of IVIG. Is IVIG something that might help the persistent exhaustion? I’m not experiencing weakness like I had during my initial onset. During that time I went from being able to walk to wheelchair bound in a matter of days. This progression of exhaustion has been over the last year. But it’s not getting better. It’s getting worse. I know what to look for and when to go to the ER. I think for so long I chalked a lof of these symptoms up to other things, but now that I’m putting them all together, it makes me wonder if it’s small relapse. It’s more than just me getting older, having 2 kids, etc. I’m also in the process of trying to get ahold of my dr in OK City. If nothing else, she could hopefully help answer questions by phone or email. I do have some of my chart from her office. An EMG result from 97 and a history and Physical with an official diagnosis.

GH – I’ve been looking online at Kaiser doctors and saw Dr Bowen Wong listed. It’s good to know that you recommend him. It’s worth driving to see a dr that is familiar with GBS/CIDP other than the paragraph in the textbooks. Thank you!!