Kris4444 Posted February 11, 2016 Report Share Posted February 11, 2016 I asked them to fax me over the results since no one was getting back to me regarding talking about the results, making an appointment to discuss or telling me what the plan is. Please help me figure out what this means. I did speak to the nurse before I saw all of this. I asked her if my diagnosis was that of Hyper Pots and she informed me that they don't use that diagnosis, my diagnosis is "autonomic nervous system dysfunction" I asked if because of my cathecholamines if I was considered "hyperadrenergic" and she said that he didn't have that written anywhere but that the high NE and dopamine would indicate that. So I don't know what to think. She said to keep in touch regarding how I'm feeling on the beta blocker and make an appointment for 6 months from now. Guess that means he isn't going to discuss anything with me anytime soon.For the ANS testing this is what the summary said:QSWEAT responses were normalHeart rate range to deep breathing was decreased on both attempts (not explained by progressive tachycardia)Valsalva ratios were normalBP responses during the Valsalva maneuver were abnormal due to prominent phase IIIHead up tilt table for 10 minutes showed transient initial hypotension followed by stabilization and accompanied by sustained mild tachycardia. Hand grip caused sustained HTN and increasing tachycardia. The patient complined of:dizziness, blurred peripheral visionBaroreflex vagal sensitivity was normalBaroreflex adrenergic sensitivity was normalInterpretation:There is evidence for mild cardiovagal dysfunction and orthostatic tachycardiaCatecholamine results Supine:Norepinephrine 858 Lab values 112-658 pg/mlEpinenephrine 34 Lab values less than 50 pg/mlDopamine 41 Lab values Less than 10 pg/mlTotal 930 Lab 123-671Catecholamine results Standing:Norepinephrine 990 Lab 217-1109Epinenephrine 43 Lab Less than 95Dopamine 37 Lab Less than 20Total 1070 Lab 242-1125Keep in mind that the STANDING portion of my test went horribly wrong. The IV was barely dripping blood and they poked and prodded for over 20 minutes with me standing the entire time. I was horribly bruised for over a week. They did say that one part of the test had to be rerun but didn't say which one.I'm concerned over the cardiovascular stuff as this wasn't really spoken about and I'm not sure what to make of it or of what happens during the Valsalva. Can anyone give me insight into any of this? Does this sound like a hyper pots diagnosis?There are specifics for the TTT showing numbers for SBP, DBP, HR and a summary that doesn't really make any sense to me but shows a SBP change of -35.0?Any help making sense of this would be appreciated! Thank you!! Quote Link to comment Share on other sites More sharing options...
lewis Posted February 12, 2016 Report Share Posted February 12, 2016 Alot of your test results looked like mine. It appears as though you are normal just like me.lol. I wish I could be more help. My doctor told me they don't know what I am feeling or why because everything was within normal range. I think the testing is very vague and needs to be refined to showing more finite results and be more tethered to the individual instead of generalized for the whole population but that is just my opinion. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 12, 2016 Author Report Share Posted February 12, 2016 The results are not normal. My tilt table test was abnormal, the valsalva was abnormal and the deep breathing was abnormal. My catecholamine testing was also abnormal with high levels of NE and dopamine. That much I know. I don't understand how to interpret the numbers on some of the tests regarding blood pressure and heart rate. They do not offer a diagnosis which I thought was weird.I did call and speak to the nurse. She said the diagnosis is autonomic nervous system dysfunction. As for Hyper Pots she said they don't use Pots as a diagnosis and they don't even have a code for it. She said since the catecholamine testing was abnormal that it does indicate a hyperadrenergic issue but that I'd have to speak to the doctor. She said to make an appointment for 6 months from now! ARE YOU KIDDING ME? She said I can contact him via their portal. I sent an email to him asking several questions. We will see how he responds. I do intend to have a face to face with him to go over the results and have him explain to me what is going on. I will not wait 6 months. Quote Link to comment Share on other sites More sharing options...
headhunter Posted February 12, 2016 Report Share Posted February 12, 2016 What hospital Kris? Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 12, 2016 Author Report Share Posted February 12, 2016 Maybe I shouldn't mention the name of the hospital. Quote Link to comment Share on other sites More sharing options...
headhunter Posted February 12, 2016 Report Share Posted February 12, 2016 Tks... Quote Link to comment Share on other sites More sharing options...
lewis Posted February 16, 2016 Report Share Posted February 16, 2016 Sorry I skimmed over your results pretty quick. 6 months is way too long to get a return appt. To go over the results. My doctor met with me at the end of my tests and we went over the results..... Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 16, 2016 Author Report Share Posted February 16, 2016 That's ok. Mine met with me after as well but the catecholamine results weren't in yet. Now he wants to send me to NIH or at least send my blood there for a more in depth catecholamine work up. Ugh. Quote Link to comment Share on other sites More sharing options...
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