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.
Hey zsleepnogood,
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.
Not that I would harm myself or othersbut a spate of bad doctors now has resulted in the option to break my face, reconstructing it to avoid apnea when sleeping. The other choice is a tracheostomy. John’s Hopkins removed all medications after requiring a 4 hour dangerous drive.
With no support of family and friends shall narcolepsy be what consumed an engineer?
Encouraging hang in there words are not helpful. Selling my 4+ be home will shelp short term until profits are consumed. Advice in locust Grove VA USA appreciated. Thank you.
Hey J,
Sorry, you won’t be getting any ‘Encouraging hang in there words’ out of me. I know how useless such sentiments are, especially when you’re looking for answers. As I stated previously I’m in Australia and my U.S. medical knowledge is nil.
In saying that I have done a bit more searching (as I’m sure you have too). Seems there are many, many “Sleep clinics”, but very few with a specific narcolepsy clinic in Virginia. I completely understand that travel is difficult, but upon looking a bit further afield, there are specific narcolepsy/cataplexy dr’s and clinics in Washington DC. Here’s a link that may help:
HINT: Refine to your specific search area. I simply looked for a big population near Northern VA
Best Narcolepsy and Cataplexy Doctors in Washington, DC | Healthgrades
Hope it helps
Merl from the Modsupport Team