Reply To: GBS or CIDP?

September 9, 2008 at 12:19 pm

Hey Rena!
Welcome. Well, this is a very tricky diferentiation. My then 10y/o was initially dx w/gbs. I would bother people on this site countless times asking if it was gbs residuals or cidp. They were so kind and always helpful, all hours of the day and night!!! After about 6 months post initial dx, I was psycho (probably have been my whole life LOL) so we went back to the doc and he did a repeat ncv/emg and tested the exact same nerves and had the same doc read it. The results were actually better than the first one 6 months ago after ivig initially was given, but not perfect. At that point the evidence diagnostically speaking was scetchy, clinically, he was weaker and his reflexes were worse. We decided to give ivig another try and once again, the results were miraculous, running again, able to dres himself, walk up the stairs etc. new dx cidp, continue ivig for 3 months at loading doses every 30 days. We rrpeated the ncv/emg again after three months and alas a perfect report, no slowed velocities or conduction blocks, consensus cidp usually does not get that under control so fast so it must have been gbs, just needed additional ivig to aid in halting the attack. OK, GBS again, six months later, another relapse. Today, we have been on monthly loading doses for 11 months. Our final dx is cidp, it is a very difficult disease to decipher. I do not think I would have done anything differently. If cidp is left untreated, you may sustain damage that you may not be able to repair from. It is important to find out which it is, gbs or cidp, a repeat ncv/emg repeat might be a good place to start. Hopefully it will be conclusive one way or another unlike our results. Luckily our doc did ivig to see if it would benefit since diagnostic tools did not give an answer. Good luck in your journey and your quest for answers. Everyone is so different!!
Dawn Kevies mom