Reply To: Recovery-"treatment related fluctuations"

Hi Heather Marie, I was diagnosed in late 2016 and had a presentation similar to yours. My symptoms were worse but I did experience the false nadir or treatment fluctuation. It sounds like both of our cases could fit in the GBS-TRF or Acute Onset CIDP camps, but as you’ve eluded to doctors don’t seem too vested in us. And somewhat rightfully so, as neuros are generally working with patients in much worse condition. However, because of that, you must advocate for yourself (appointments, treatments, & rehab). My wife and I pressed hard for a second round of IVIG based on a research paper (ICE Trial), and we’re able to get early & often out-patient appts through persistence.

Allow yourself to rest; especially early on in rehab. Having led a fairly active lifestyle prior, and having rehabbed other injuries, it was insane what ‘pushing myself’ bought me in the beginning. After a couple of weeks of frustration and no noticeable gains, I switched to workouts that were basically glorified stretching sessions and started noticing better results.

And wrt your comments on continued numbness and the lower trunk pain, please look into corticosteroids. There generally isn’t much research that supports steroids for GBS patients, but it was huge for me. It knocked down my original, severe lower back & hip pain, and gave me the energy boost to really engage in my rehab at the hospital, and I noticed a significant recovery in nerve response when I took a second round 1.5 months after release.

I hope this info helps, but even more so hope, you’re doing better and don’t need any of it.