Looks like this one had an overwhelming response. I suspect that outside the other dozen or so doctors on TOTV and a few people with this disease, no one even knows what Chronic Inflammatory Demyelinating Polyradiculopathy is, and I'm not so sure about the other doctors---after all, unless your a neurologist, or in primary care with a few patients that had this condition, you would have no reason to know it even exists. People are more aware of the acute form---not usually referred to as AIDP but rather Guillain-Barre syndrome.
I don't know of any support groups, but clearly your diagnosis was made by a neurologist with confirmation by MRI and EMG. Perhaps he/she knows of such a group.
|