Do you have a "name" for variant?

September 28, 2010 at 1:27 pm

Hi all! My husband has had a variation of this disorder since 2002. In 2005 we went to see Gareth Parry and found out he had an even rarer variant of GBS/CIDP that involved small and large fiber neuropathy. Back then…. (in the good ole days) there was no formal name and the doc called it “chronic inflammatory demyleniating/axonal, sensory/motor, small and large fiber neuropathy” yeah….. soooo my question is , for those who have this variant have they given it a “name” yet? My husband is maxed out on meds, kicked off the IVIG list a long time ago due to “lack of research of specific disorder” lol. We take it day by day and any new symptoms are sent to doc but always in the back of your mind you wanna give it a name………

You have to live every moment to the fullest with any disorder. When our baby (of 5 boys) graduated school, we got rid of the house bought a 5th wheel camper and are seeing the US on our terms. No regrets! Thats the idea…. no regrets!