• ewd
      July 3, 2017 at 2:06 am

      Hi everyone!
      Does anyone have any experience with GBS-TRF (Treatment-related fluctuations)? My husband’s doctors can’t decide if he has GBS-TRF or CIDP (mainly because the timeline doesn’t match up) and now they want to just wait and see if he will relapse again for a third time to give him a firm diagnosis (which we obviously don’t want to go through again because his relapse was very severe and seemed to be worst than the initial GBS attack).

      I guess my question is/are, can CIDP relapses be severe to the point of being quadriplegic and severely affecting breathing and swallowing EVERY time it happens? How soon do these relapses occur on average? And can it be stopped before it downward spirals out of control?

      Any input on this would be immensely helpful!

      Extra info:
      – 2 rounds of IVIG (one round for each time), did not need to be intubated but spent a couple of days in the ICU for close monitoring because he got really close to needing it (3 times total),
      – feeding tube twice,
      – elected for nerve biopsy – waiting for results
      – been in the hospital for almost 2.5 months now

    • GH
      July 3, 2017 at 11:21 am

      There is a lot of variation in the presentation of acquired peripheral neuropathies. Are the two loading doses of IvIg the only treatment he has received? Did it seem to help? For how long?

    • ewd
      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.