autumn Posted May 4, 2011 Report Share Posted May 4, 2011 I had my autonomic testing at BIDMC in November, and everything came back normal, except for the tilt-table test, which was borderline abnormal for orthostatic intolerance -- I was having a pretty great day as far as symptoms go. Not long before, I had a TTT done, ordered by my primary care doctor, that showed the typical POTS tachycardia. So two tilts, two different problems revealed. I'm bringing the report from the first tilt for Dr. Freeman to look at. Anyway, I've heard Dr. Freeman can be ... difficult. Can anyone tell me what I can expect? Anything I should do to prepare? I'm bringing what medical records I have, including a bunch of tests and holter monitor reports from my old cardiologists. I have a handful or two of questions, too. I'm not really looking for a cure-all or a major treatment plan, really. I wasn't even interested in seeing him, but my PCP said I ought to. I'm hoping because I'm not going to go in there expecting him to fix me, it won't be a frustrating appointment for any of us. I just want to know if he can help me figure out what parts of me are malfunctioning.The secretary also said there's a possibility he'll want to schedule more tests. I live three hours away, so I'm kind of hoping that they can schedule them for the same day or next day so I can just stay in Boston and not have to make a repeat trip. Did anyone have more tests after the evaluation with him? What were they? I'm wondering what he'll want to do now that I've had to two fairly different -- and not normal -- tilt-table tests.I'm so nervous. I'm also pretty tired of doctors and tests. Any advice or words of encouragement are appreciated. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted May 4, 2011 Report Share Posted May 4, 2011 Hi Autumn. I hope your appointment goes well and is not frustrating. I have nothing to add about Dr. Freeman. I have not met him. I had my autonomic testing done elsewhere, but my new neurologist refers his patients to Dr. Freeman, so I may be meeting him in the future. I remember reading a positive comment about him (among the negatives) so I hope you can add to that! Let us know how it goes! Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted May 4, 2011 Report Share Posted May 4, 2011 Just trying to offer some words of encouragement Hope everything goes well, you get some answers and 'find out which parts are malfunctioning'I PMed you as well. Take care!!!! Quote Link to comment Share on other sites More sharing options...
Lenna Posted May 4, 2011 Report Share Posted May 4, 2011 Autumn, I sent you a private message as well.Lenna Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 6, 2011 Report Share Posted May 6, 2011 I just want to know if he can help me figure out what parts of me are malfunctioning. YUP!Autumn - Did you see him? How'd it go? Quote Link to comment Share on other sites More sharing options...
autumn Posted May 6, 2011 Author Report Share Posted May 6, 2011 I just got back home from the appointment. Boston traffic is a nightmare! Anyway, I thought Dr. Freeman and his fellow were great. Kind, pleasant, thorough doctors, and they listened to what I had to say and answered my questions to my satisfaction. They didn't brush me off, which was my major concern with having only borderline-abnormal tilts and otherwise normal tests. They won't diagnose me with POTS, but they won't take my PCP's diagnosis away either -- yet. They said my clinical history is certainly consistent with POTS, so they want me to repeat the autonomic testing; they said patients have fluctuations in symptoms, and they agree with me that they probably caught me on a good day. They indicated that they expect to get a positive test and are still treating me as though I have POTS: a high-sodium, high-fluid routine, plus Florinef. They also said it looks like I might have EDS -- I already knew my joints are hypermobile, but I didn't know that my skin is abnormally elastic, which made me laugh a little -- and they want me to have genetic testing to confirm. They said it could explain my POTS symptoms and the blood pooling and whatnot. I have to sort out whether insurance will cover that testing. If it doesn't, I don't know what I'll do.I showed some nerve issues during the workup, so they did some bloodwork to look into that further. I'm also supposed to have a sleep study -- done locally, thank goodness. These doctors were fantastic, but I don't want to drive a six-hour round trip just to have a test or two. I'll probably schedule the repeat autonomic testing for the summer, when the heat will have me more symptomatic. I also have to keep a BP and HR journal. I'm so relieved they're taking me seriously. I'm also pleasantly surprised with how well the appointment went. I genuinely liked both doctors. (And a side note: Dr. Freeman has awesome hair.) Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 6, 2011 Report Share Posted May 6, 2011 Yey, your post made me smile! So happy to hear your visit was positive and productive! So many times this is not the case. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Lenna Posted May 7, 2011 Report Share Posted May 7, 2011 Autumn, i'm so glad that it went well. That's great news.Lenna Quote Link to comment Share on other sites More sharing options...
Noreen Posted May 7, 2011 Report Share Posted May 7, 2011 Wonderful that the appointment was good and you survived the long day.Re: your HR and BP journal. What frequency/timing do they have you doing? Any positions - sitting, lying, standing? Quote Link to comment Share on other sites More sharing options...
autumn Posted May 9, 2011 Author Report Share Posted May 9, 2011 Thanks for all the support, everyone!Reen, I'm supposed to take my BP/HR three times a day, two readings each time. I don't have the paper handy and I haven't started yet (oops), but I think the first reading is supposed to be after I've been supine for at least a minute, and then the second reading is after I've been standing three minutes. I still haven't been able to get through more than two liters of water a day. It's difficult because the fluid literally goes right through me. At work the other night, I was in the bathroom three times within 45 minutes, and I just don't have the time to pee that often! Maybe the answer is lots more salt? Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted May 11, 2011 Report Share Posted May 11, 2011 So nice to read you had a postive experience! Good luck with sleep study and repeat autonomic testing. Please keep us posted! Lyn Quote Link to comment Share on other sites More sharing options...
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