jesse1919 Posted July 12, 2005 Report Share Posted July 12, 2005 Brief history: I was diagnosed POTS at Mayo in April. Then I came back to L.A. and started working part time again. I have been feeling progressively better and recently started playing volleyball again- yeah! I've been doing salt/fluid, exercise, raise head of bed, trying not to worry/ reduce stress and getting enough sleep. But I'm still sleeping a lot and run-down all the time so I was looking forward to seeing the local electrophysiologist to get some meds started and get back to work full time....So the EP looks over my Mayo records and asks why I'm there to see him today. I tell him I'm doing better than I was but I'm still fatigued and working part time. He says that from my records he doesn't see why I should be fatigued and I'm not fainting or anything. Yep- no clue about POTS. He said that he had no idea how to treat me and that if Mayo couldn't help me he couldn't either. He said he could hardly even understand the summary from my tilt test "distal postganglionic sudomotor failure..." He told the receptionist to give me my copay back and make me a copy of my records (a good sign that he was at least curious). I was initially just happy he didn't BS me but as I walked to my car I grew more disappointed. I waited so long to see him. And I DID ask the receptionist to ask the doc if he has treated POTS before but she didn't. I got to the car and remembered that I had a copy of the paper "Deciphering the Sinus Tachycardias" with me. I thought of all you wonderful DINET folks and how sick I was a couple months ago so I walked back in and gave the paper to the receptionist to give to the doctor. Hopefully he'll read it. Well, I guess I'll try UCLA next. *sigh*Jesse Quote Link to comment Share on other sites More sharing options...
Roselover Posted July 12, 2005 Report Share Posted July 12, 2005 Oh Jesse, I KNOW this kind of disappointment!!!!!! I'm so so sorry!!!!! I saw my family doc yesterday and she said to me, "There must only be one or two doctors in the country who really treat this!" I think there are a few more than that, but she's getting the idea!Hope you can treat yourself to something nice today.Love Roselover Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 12, 2005 Report Share Posted July 12, 2005 Hi,Have you ever considered seeing an endocrinologist. So far, they are they ones that have been helping me the most besides Dr Grubb and Dr Goldstein.Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 12, 2005 Report Share Posted July 12, 2005 sorry you've experienced that same disappointment I've had with several EP's. I had one tell me that there was nothing wrong with me, and that if I were his daughter he'd tell me just to go on out there and have a nice life. He's lucky I didn't do him bodily harm as I was soooooo mad! I'm about to go back to a somewhat sympathetic but under-informed EP in August. I'm hoping he'll be willing to learn. We'll see. I wont get my hopes up.Nina Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted July 13, 2005 Author Report Share Posted July 13, 2005 Thanks for the support everyone An endo? really? I did see an endo before I was diagnosed at Mayo. I did tell her that I'm POTS after but she didn't say that she treats it- I really doubt she would. I'm just going to wait to see Dr. Yan-go at UCLA.Best of luck to everyoneJesse Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 13, 2005 Report Share Posted July 13, 2005 JesseSorry about your very disappointing experience. I am surprised--I would have thought EPs would know *something* of POTS these days--even if most other doctors don't. I am glad you have another alternative, but sorry you have to wait so long to get help with your symptoms! Glad that you are doing progressively better, overall.Katherine Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted July 13, 2005 Report Share Posted July 13, 2005 Jesse,I'm sorry to hear about your experience with this EP-----sounds kind of useless to me. And EP should know about all the different types of syncope. He/she is behind the times. I know the continuous ignorance is still there with a lot of doctors, but EP's should know better.Uggg----when will this craziness ever end?------------Good luck with the other Doc at UCLA-------------------- Julie :0) Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 17, 2005 Report Share Posted July 17, 2005 Jesse-sorry to hear of your frustrating experience. sadly enough (in terms of what it says for the medical community) i'm actually impressed that the doc at least acknowledged his ineptness rather than try to BS his way through things or blow you off in an even worse way (i.e. by blaming you).still, it is SO discouraging when your hopes are up for a new doc and something of the sort happens. i've had it happen even with an old doc who had helped me in the past but then told me my problems had elevated to a level that he had no clue about. and he is the head of EP at one of the top hospitals in the country. i was definitely bummed.in regard to the mention of seeing an endo, i think various people on the forum have had different encounters & for different reasons. if i recall correctly some may have an endo as part of treating their POTS, etc. and some of us, including myself, see an endo b/c of a concurrent, potentially related (no one really seems to know) disorder that can make the POTS/NCS worse or vis versa. i agree though that most endos probably wouldn't automatically advertise treating POTS. many endocrinology problems share A LOT of symptoms with POTS though so it can potentially help some folks...hope your appointment at UCLA goes well...:-)melissa Quote Link to comment Share on other sites More sharing options...
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