SpinnyC Posted April 18, 2013 Report Share Posted April 18, 2013 I might be joining the triple diagnosis club. I know there are others here who have, or are suspected to have, all three and am wondering a few things...1. Who becomes the primary doctor to manage all this for you? Genetics, Neuro, Cardio, Allergy? Or is it all just fractured care that you pull together yourself?2. Does anyone know of studies or doctors that are looking into all three conditions as a whole?3. Do you also have symptoms similar to Erythromelalgia or Raynauds? Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 18, 2013 Report Share Posted April 18, 2013 In my case for question #1, I have all of the docs you listed plus I meet with my PCP every 3 months so he can keep his notes up to date for insurance companies, my upcoming SSA hearing, and in case I end up with some normal illness like strep, he already knows what's going on and can easily treat the more common problem or even give info to an ER if need be. It seems confusing at first but once you get a good team going and establish relationships, it works out OK. But, you admittedly will have to be the coordinator between the specialists. Quote Link to comment Share on other sites More sharing options...
SpinnyC Posted April 18, 2013 Author Report Share Posted April 18, 2013 Good point about the PCP. Recently I've been thinking I might (unfortunately) have to find a new one. I've always liked my PCP, her approach and the way she thinks about all the regular problems that come up, is great. But when it comes to this more specialized chronic stuff it seems like she is very hands off and out of the loop.Plus add to it that it seems she now has have a very limited schedule. So I keep having to see different doctors when I go in for all these little weird complications I get from having these three conditions. I can't remember the last time I actually saw my real doctor and it's starting to bug me because I feel like she has no idea what's happening.Admittedly though- I'm so sick of seeing doctors that I think son some level I might have let the situation continue as long as it has just so I don't have to see one more doctor on a regular basis. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted April 18, 2013 Report Share Posted April 18, 2013 I am very lucky and have an internist (I used to work with him in clinic ..... who co-ordinates with all of my other specialists and oversees my treatment on the whole. I was just diagnosed with EDS through biopsy recently so I am officially part of the triad club now (not a club I really wanted to join ....) my GP just takes care of the normal stuff all the other stuff is waaay out of her scope and she doesn't really want to learn Not sure of any doctors that are studying all three illnesses but at least my specialists have heard of them I also suffer Raynauds.....not sure of the significance of itBren Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 18, 2013 Report Share Posted April 18, 2013 I don't have Raynaud's but it is common with EDS. Quote Link to comment Share on other sites More sharing options...
SpinnyC Posted April 20, 2013 Author Report Share Posted April 20, 2013 Bren, sounds like you do have a great internist. Wonderful to have that doctor act as the coordinator.Katybug, very interesting that Raynaud's is common. I wonder about Erythromelalgia. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 21, 2013 Report Share Posted April 21, 2013 I don't know about erythromelalgia but you can go to www.ednf.org (EDS National Foundation website) and search it there. There's tons of info on that site. Quote Link to comment Share on other sites More sharing options...
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