Jordan5815 Posted March 24, 2010 Report Share Posted March 24, 2010 This test was hard to find took me a while to get my hands on it. People kept giving me the run around lol.See attached images. Looks like I am in the 1 percentile on something. I don't know how bad it is.... or what this stuff means any help with any of it greatly Appreciated! By the way I was feeling really good when i took this test my hr is usually a lot higher. The test before this one my blood pressure went up instead of down so that is weird so any explanations on that? this test it the blood pressure actually dropped and raised up so I don't know what to think about this. I'm pretty worried about that pulse pressure and the fact that it said 1 percentile and 8 percentile on somethings.Here are the test results.Is this bad like serious? or is this normal? Would really like to know if this is bad or not.......- John Quote Link to comment Share on other sites More sharing options...
lieze Posted March 24, 2010 Report Share Posted March 24, 2010 Well that is a good question for your doctor.I always freak out on test results.Then the doctor looks at it and says this looks pretty normal.I get all worked up for nothing usually.lieze Quote Link to comment Share on other sites More sharing options...
Jordan5815 Posted March 24, 2010 Author Report Share Posted March 24, 2010 Doctor already told me he doesn't want to see me again and to find a new neurologist....... so yep! Quote Link to comment Share on other sites More sharing options...
lieze Posted March 24, 2010 Report Share Posted March 24, 2010 So is that good news or bad-that he doesn't want to see you again?I don't really get that-not wanting to see you.Well either way if he was really worried he would have ordered more tests or something on the spot I would think.lieze Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 24, 2010 Report Share Posted March 24, 2010 Hi John~Unfortunately, none of us are doctors on this site, so you really need to get a doctor's opinion on your test results. I agree with Lieze, usually I freak out on my test results, too, and they're rarely anything to be too concerned about. Only your doctor can really tell you, however. I would find out why your doctor doesn't want to see you again. I find that strange. Does he think you really don't have a problem, or that your problem is out of his range of expertise?Good luck and cheers,Jana Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 24, 2010 Report Share Posted March 24, 2010 Hi John,Jana's right. MOST of us aren't doctors (including me ) but I did carefully look over your results as though they were a family member's. I am shocked that your neurologist didn't want to see you again. Perhaps, he was just a diagnostician, as opposed to a treating physician? Did he refer you to anyone that could help you with treatment?He's DXed you with pandysautonomia. We've had quite a bit of chatter about that recently. I am guessing that it can range from mild to quite severe. It progresses in some patients, but not in others. (How's that for a non-answer?) Truth is, not much is known about many of the autonomic illnesses. ( Maybe google this to learn more.) Are your day-to-day symptoms really bad, mild or do they vary? The tests note that there is one spot on your leg that keeps sweating- even after stimuli (heat!) is stopped. This leads your doc to guess that you have some degree of neuropathy.Your TTT is fairly uneventful- you said it was a good day Yay! No POTS, but it looks like you tend towards NMH or NCS- your BP dropped, but not completely. The notes say you said no symptoms- right? Most likely you are quite used to this happening & cope well It was only a 10 minute test. A longer one is much more telling for folks with NMH or NCS. My son's BP didn't totally drop out (immeasurable) until 35 mins. I wish they had kept you longer so that you would have more conclusive results.Your HR variability is MOST notable. It appears to be quite stable and doesn't change very much at all. Can you exercise? How do you handle exertion? My guess is that that would be very difficult for you. Overall, this is an abnormal autonomic set of tests. I hope someone counseled you on your DX and gave you treatment recommendations. If not- , I can't believe that you would go through all of that extensive testing to learn nothing. I am sorry if this is the case. Please find someone in your area who will understand these results and offer ongoing treatment. Maybe post WHERE you live (in general) and folks can chime in with good doctors near you.All the best-Julie Quote Link to comment Share on other sites More sharing options...
flop Posted March 25, 2010 Report Share Posted March 25, 2010 I'm sorry to hear that the doctor who requested the tests doesn't want to follow up with you, maybe they feel that don't have the experience to deal with autonomic issues?As others have said you really need a doctor to go through the tests with you and explain what the results are and if they can give you any information about treatment and the severity of your condition.From reading the results I think the lable "pandysautonomia" has come from the fact that there are abnormalities on several of the tests, not just one test which might have given a more specific diagnosis. I have never seen these sorts of results before but especially looking at your TTT there isn't anything that would make me panic if they were my results (sorry - does that make any sense?? What I mean is that there are obviously issues but I can't see anything that makes alarm bells ring).I notice that the doctor who requested the test is not the doctor who reported the test. Can you get an appointment with the doctor who reported the tests as he is clearly an autonomic specialist and could probably explain things to you properly.I hope you get some answers soon,Flop Quote Link to comment Share on other sites More sharing options...
Jordan5815 Posted March 25, 2010 Author Report Share Posted March 25, 2010 The doctor treats children and not adults and he is the only one that I could find in my health care plan. He diagnosed me and had the tests run but that is where he stops. The other doctor only deals with the "serious" autonomic conditions like msa and the other ones. Houston Texas is pretty limited on who I can go to. I am seeing a neurologist tommorrow who said she would do a consultation with me so hopefully it goes well I will let you all know. Appreciate the response and the analysis I've just been out of the blue I want to upload another tilt table test to you guys and you guys will be like WOAH because in the tests it looks like it's a different person complete opposite that was on an average day, back when it was really bad used to be worst now i fade in and out of bad days. I'm never perfect but striving to be...Thanks,- John Quote Link to comment Share on other sites More sharing options...
Jordan5815 Posted March 25, 2010 Author Report Share Posted March 25, 2010 Double post/ignore Quote Link to comment Share on other sites More sharing options...
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