July 4, 2017 at 2:24 am
His first onset of symptoms occurred on April 21st (week 1). After a round of IVIG (5 days) he deteriorated a lot more before reaching plateau by week 3-4. From there he started showing small improvements everyday; still unable to sit up, stand, or move his legs but he was getting better. He was discharged to the in-patient rehab centre at 6 weeks, and not even 2 days after arriving he lost strenght in his left shoulder/arm (had trouble lifting it up). The doctors and physio were concerned but thought it was best to wait and see if it would get better by itself (thinking it could be muscular).
2 weeks later (week 8), his strenght in his left arm and shoulder are completely gone and it started to affect his right side too. In that moment, the doctors transferred him back to the acute hospital for further monitoring. Not sure if maybe stress had to do with this or if it was just the disease, but the moment he got back to the acute hospital, he started crashing really fast losing all progress made so far and more within 3 days. We begged the doctors to give him the IVIG but they wouldn’t start any treatment until they can conclude that he doesn’t have another disease. We ended up waiting 4-5 days in total before they started him on another round of IVIG (week 9), all in the while we watched him deteriorate worst than when it first began.
A day or two after the 5 days of treatment was completed (week 10), he started to show improvements again all over his body.
This confused his doctors a lot. Since the timing of the symptoms and relapse are off, they can’t figure out if he has GBS with treatment related fluctuations or CIDP. Their solution is to just wait and see if a third relapse will happen…
We are currently on week 11, 2 weeks after second round of IVIG started. His first round from first infusion lasted 5 weeks before his relapse began.
So frustrating.July 3, 2017 at 8:11 am
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!