Most of the sites “everyone else” uses do not show any physicians who specialize in Narcolepsy. Went to a major medical center, had an OK experience, then three weeks later find out the doctor left, and his replacement will not telemedicine with me! (2-3h drive I am not up for.)
Any suggestions for a West Virginia (northern) or Virginia (northern) patient that seems to be deteriorating? Thanks and God Bless. (most info here looks to be old, hope we can start some new conversation.
When it comes to rare conditions often finding knowledgeable medicos can be a huge issue. There are lots of people who profess to have ALL of the knowledge, but very few who actually do. Now, I’m in Australia and my knowledge on the U.S. medical system is next to nil, so my advice would be to network with a specific narcolepsy group in VA.
I did a quick ‘Google’ search, but again I’m a bit lost in regard to your location, the services you may have already approached and which services maybe appropriate or not. Because of this I’m going to suggest you make contact with Central Virginia Narcolepsy Support Group on Facebook. Here’s a link to Central Virginia Narcolepsy Support Group | Facebook. They should be able to direct you to services that would better meet your needs than I. They would also have experience in regard to ‘Good’ services and the ones to avoid.
P.S. I noticed in your application you state you had attempted to join previously. Upon having a bit of an investigation I found your previous membership. Our records show that our server sent out an confirmation email which contained a link. You needed to click that link to confirm, on the previous application it seems the email link had not been used. This will be why you didn’t get access previously.
Hope it helps
Merl from the Modsupport Team.