Gene, how very true?
Last I looked it seems there is only one neuro [either in Italy or France] that has it and is practicing…actually doing LOTS of research. Wonder what the motivation was?
Look at the ‘history of CIDP and of GBS’ and you will find that older research used to call CIDP – ‘Chronic GBS’. Since that time additional types of GBS have been ‘added to the list’. Further, CIDP has had lots of amendments that are different from GBS symptoms to include auto-immune and agressive peripehral neuropathies. CIDP now has over 20 sub-sets and seems to be growing. GBS has at least 15 sub-sets if I recall correctly.. They all overlap with lots of other conditions -cancers, auto-immune, and toxic issues. They mimic or overlap many other conditions as well, endocrine, cancers and who knows what else? Diagnosing is the key in my mind…sooner the better. Treatments for the SYMPTOMS once all the right tests are done and in really don’t change much.
As for causes? Soo many, many life aspects can come into play: infections, toxins, stresses, environment…well we do not live in laboratories. Focus on the diagnoses and treatments, causes, may be a mystery, but you may find that as some other issues develop that, they may all be related. At what time and why and how are mysteries…But It all Happens!
Me? It took me well over a year to get a diagnosis. With my first IVIG I could walk for an hour without PAIN! That I like?!!!!