Thanks Karol! I've aleady tried both (The Louisille Lupus Foundation doesn't even exist anymore.) I'll try the National Chapter, but in the meantime, if anyone has had a good or not so great experience with a doc in Louisville, please let me know.
You can use this list to locate rheumies in other areas too.
I would plump for those at the University of Louisville. Dr Callen is a very well known dermatologist specialising in skin and connective tissue disease but I haven't heard of the others except that Dr Schneider wrote a paper along with Dr Callen about SCLE and SLE. Me not having heard of the others doesn't mean anything. I would google each of their names to see if by any chance they have publications, have spoken at conferences etc. Or call the office and ask how many lupus patients they have.
I might call Dr Callen's office to ask about vasculitis/CNS specialists. He must know of some!
I hope this proves a useful starting point and wish you the best of luck
I'm sorry, I didn't pay due attention to your saying " Just trying to get diagnosed!:sad:"
If you mean you haven't been diagnosed with any sort of lupus or similar disease you need to see a rheumatologist first who can thoroughly examine and assess you then refer you to whatever specialists he judges are needed.
Diagnosis of any sort of CNS lupus can be difficult and is highly specialised and the same goes for vasculitis which has a myriad of possible symptoms, each of which has more than one possible cause.
If you are already seeing a rheumy you will need to consider why you haven't been diagnosed yet because that is the very first priority. If you haven't seen a rheumy yet, it doesn't make much sense in my opinion to be seeking a vasculitis specialist or indeed a CNS lupus specialist ( whatever they are) because as far as I know most lupus specialists are competent to deal with it.