BendyScooby Posted June 11, 2006 Report Share Posted June 11, 2006 Hey guys,got my results back recently and they say I do not have autonomic dysfunction. So now I basicaly have a lot of unexplained symptoms which is worrying. This morning I also had what can only be described as a seizure. I was twitchling and flaying about madly in bed. My whole body started going into convulsions then my arms started flying about. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted June 11, 2006 Report Share Posted June 11, 2006 Hi there, What type of autonomic testing did you have and where? What did they think you had if not Dysautonomia? Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted June 11, 2006 Report Share Posted June 11, 2006 Which tests did they do? My autonomic function tests (Valsalva, heat/cold, handgrip, etc.) came out that my results were consistent with POTS... when my cardio looked at the results, (as well as my echo and my joints), he mentioned JHS, so indicated that my POTS isn't primary.. Maybe it's just my own interpretation, but it seems that ANS testing like those tests are used to measure the amount of autonomic neuropathy (fx. primary dysaut. due to damage to the ANS from a viral infection)... and don't necessarily indicate that you don't have POTS or other autonomic problems... Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted June 11, 2006 Report Share Posted June 11, 2006 Hi,I am also curious as to what ANS testing you had as well.. Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 12, 2006 Report Share Posted June 12, 2006 Hi,You could have your result interpreted by another specialist. Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted June 12, 2006 Author Report Share Posted June 12, 2006 Hi,they put me on a tilt table while my blood samples (plasma catecholamine) and blood presure were taken. That's when I fainted. I also had some breathing excersises, I had to have my hand frozen and had a 24 hour ambulatory blood pressure and heart rate minitor but I couldn't keep it on as my veins were swelling up so much they hurt. Results came back negative and they didnt suggest what else I might have wrong. Also (I forgot to mention before) the palpitations were coinciding with the twichtes that hapenned the other morning. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted June 12, 2006 Report Share Posted June 12, 2006 Sounds like they put you through the ringer!I'd still take those results to another doctor who'se familiar with Dysautonimia before you start persuing another diagnosis. If you're fainting and having swollen veins, it sounds like autonomic dysfunction to me...but I'm not a doctor Good luck! I hope you find answers soon. I had to fight for nearly six months before I was officially diagnosed with POTS. Before that I was given every diagnosis under the sun EXCEPT POTS. Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 12, 2006 Report Share Posted June 12, 2006 Hi,I wonder why they say your results are negative especially if you fainted! How do they justify that? Quote Link to comment Share on other sites More sharing options...
sally Posted June 12, 2006 Report Share Posted June 12, 2006 HiI see from your note that you have Ehlers Danlos Syndrome.read this from the genetics website I have, that notated.....Quote from website: Autonomic dysfunction. Approximately one-third to one-half of individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance. Holter monitoring usually shows normal sinus rhythm, but sometimes reveals premature atrial complexes or paroxysmal supraventricular tachycardia. Tilt table testing sometimes shows neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia syndrome (POTS) [Rowe et al 1999]. I would get a second opinion or question the doctor that did your testing and gave you your results. If you fainted while tilted on a tilt table I would question how he/she feels you do not have an autonomic function problem. Especially since you have EDS as well which can effect the blood vessels. Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted June 12, 2006 Report Share Posted June 12, 2006 Hey- do you mean that your tilt was negative too? Do you know any of the numbers, or is that just what the doctor said? I'd get a second opinion, too... At any rate, to hope they are thorough. Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted June 13, 2006 Author Report Share Posted June 13, 2006 No I didn't have any of the numbers, results anything. Not that I would haev understood em. Dr Hakim wrote to me telling me that it was normal so I emailed him and he said he thought it was odd and that I should ask them to look into it which I just did so am waiting to hear from them now. It wouldn't bother me too much bt my sypmtoms have been getting worse. And that sezeire (sp?) the other morning was bizzare. Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted June 13, 2006 Report Share Posted June 13, 2006 Just out of curiosity- do you faint often? Was that the only time? Did they have another suggestion as to why you did, and/or do you have any other types of testing scheduled or set up to discuss with a doctor?Hope you can figure this out!! Quote Link to comment Share on other sites More sharing options...
photchkiss Posted June 14, 2006 Report Share Posted June 14, 2006 Hi. Could you please post the link to the site for the below quote. thanks!HiI see from your note that you have Ehlers Danlos Syndrome.read this from the genetics website I have, that notated.....Quote from website: Autonomic dysfunction. Approximately one-third to one-half of individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance. Holter monitoring usually shows normal sinus rhythm, but sometimes reveals premature atrial complexes or paroxysmal supraventricular tachycardia. Tilt table testing sometimes shows neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia syndrome (POTS) [Rowe et al 1999]. I would get a second opinion or question the doctor that did your testing and gave you your results. If you fainted while tilted on a tilt table I would question how he/she feels you do not have an autonomic function problem. Especially since you have EDS as well which can effect the blood vessels. Quote Link to comment Share on other sites More sharing options...
sally Posted June 14, 2006 Report Share Posted June 14, 2006 Hi Joe,here's the websitehttp://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome Quote Link to comment Share on other sites More sharing options...
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