Finding a specialist

[Monica2000]

I'm sorry for all the questions ... I'm a little overwhelmed by all this. I looked up the medial links on the site, but needless to say, none of the top experts are either in my area or covered by my insurance. (Most likely I'll never find one covered my insurance.)

Under the circumstances, where do you begin to look? I assume it would have to be a cardiologist. But the one who did the tilt table test six months ago had no further ideas about where to take this, so I've never seen him since. I've been seeing an endocrinologist recently ... would he be able to tackle this? My GP is completely clueless.

My other option would be to go to a specialist at a big university/medical center and pay for a consult. But what good would it do? I couldn't afford the tests, follow-ups, etc.

Thanks again for any suggestions.

Monica

[morgan617]

Monica, I live in Spokane, Wa. and you would think it was the end of the universe. I have a great pcp who reads all the info I give him and has called specialists back east many times. He never gets a response. He doesn't know what is causing my problem and assumes we never will. You can apply for research at NIH or someplace, but you are right. Costs are very prohibitive and research studies far and few between. If you live back east you stand a better chance of getting in to someone who knows something without it bankrupting you hopefully. I have just come to terms with mine, however I do call the NDRF and they send me stuff, which I in turn give to my primary and he reads. That's about all I can do, so I've just learned to deal.For those of us who don't have the means or resources, it can be very sticky. Most insurances, however, do cover some things out of area, if no one is available where you live, so you might check on that. Sorry this isn't more helpful, but I just found it to be one futile end after another. So i go one day at a time. Some are fair, some bad. I think you are much younger than me (50) so you feel you have to be much more aggressive about it. Cleaveland has a good clinic according to some, but others have had negative experiences. You will find that with every place there is. My cardio here thought I should go to Oklahoma someplace. Can't remember where. You get both good and bad stories here and overseas or in Canada. I think it just depends on what and where you are willing to do and go. morgan

[EarthMother]

Clueless doesn't bother me in a doctor as long as they are willing to dig in and learn WITH me. From my vantage point everything out there is hit and miss. Somethings work for some people some of the time ... and the things that once worked before may not work now. In some ways it is a moving target. So for me, the "best" doctor I could find was one that was willing to read everything I brought in ... and some stuff he'd find on his own. Would email the doctors who looked to be doing interesting stuff and who could hook me up with really good cardiologists etc. when I needed the big guns.

I see my PCP every couple of months and we really sit down and look at what is going on. If I say I am feeling better, he puts the pen down looks me in the eyes and says ... "what do you think it is attributed to?" He is really willing to work with me And I really value his persistance.

In all, I think it's not so much about finding the "right" doctor, but finding the right fit between how you want to tackle this and what they are willing to do as a partner in your wellness plan.

Good luck in your healing journey.

EM