New here and diagnosed very late

Hi,
Glad you found this site. At what level of disability are you? What was the reason your dx was not confirmed until 4 years after? What is your dx, gbs or cidp? If you contact the foundation, they can help you locate a doc, as well, they can hook you up with a laison in your area. I have an eleven y/o w/cidp, so I only know of Dr. Sladky out of Emory in Georgia. He obviously is peds, but perhaps there is another doc at Emory that can help. Good luck to you, and you will find much help and support on this site. It is my lifeline, both from an advice standpoint regarding my sons condition and as a support group for myself as a caregiver. You will find just how easy it is to slip into the conversations and become one of the family!
Best wishes,
Dawn Kevies mom

Hello,
Welcome to your new family where we feel what you feel. I saw one of the top rated neurologists in the US for a consultation and since a year, possibly more had gone by before I was diagnosed; the first thing he told me was that it’s NEVER TOO LATE!

Try one of these neurologists. I don’t know what their knowledge is of CIDP, but they do know neuropathy’s.
Jonathan Glass….. Emory University School of Medicine
Keith Sanders….. don’t know what hospital he’s associated with
BOTH FROM ATLANTA

One thing I’ve learned to look for when I need a new neurologist iis how accessible the building and office is……….are their ramps or steps…..bathrooms……cramped waiting room or large and roomy. If wheelchairs can move around, there’s a good chance this doctor has treated severe CIDP.

truly hit a ‘nerve’ about accessability to the neuro’s office! Just opening the doors to offices seems like some sort of TEST!
And then, so many neuro’s seem to have their offices at the very very end of long, hard to find twisty corridors! Always seems to me like passing certain tests or secret code words or something… And these are the ‘Professionals’ who are ‘dedicated’ to treating us?
I admit, my own neuro has few shortfalls, but the ‘bathroom issue’ is a constant. Other neuros’ I’ve written off, were worse overall in the whole ‘accessability’ set of issue. Any of these guys ever hear of the ‘ADA’???? Think it’s a ‘forgotten’ issue or something.
Sorry ‘E’ but this just pushed one of those ‘buttons’ we all have! Thanks.

Hi and welcome,

I don’t have any doctor information for you, but I wanted to say that I was misdxed for about 5 and a half years. I know it’s beyond angering to find out that you COULD have been having treatment or have been properly helped for all that time, but believe me at least getting on the correct diagnosis/treatment track really does wonders. Even though things may have been a little better if the diagnosis came sooner, things will get better now. Good luck finding a doctor and beginning your treatment!

– Dana

thanks for the reply. I’ve been very happy, which is a big switch, with my doctor. (we live in a medically lacking area.)

I’m still learning to post…… I realize that wasn’t a response to mine….