Reply To: Husband newly dx GBS but relapse at 4weeks, help or advice

July 3, 2017 at 8:11 am

Hi MJ,
Any updates in regards to your husband? Were they able to give him a diagnosis? Hope he’s getting better.

My husband had a small relapse then a big one all within 6-8 weeks of symptoms onset similar to your case (ICU 3 times total, close to getting ventilated each time but ultimately didn’t need it). His doctors also can’t decide if he has GBS-TRF (treatment-related fluctuations) or CIDP because timeline is completely off.
They want to watch him to see if he will crash again in order to determine a dx (which is completely absurd because he crashed hard this last time); their reasoning is that they don’t want to give him any more treatment/medication if his body doesn’t need it. But the unknown is driving us insane!