andybonse Posted August 9, 2013 Report Share Posted August 9, 2013 Hi all,As I've not been very well the past 3 months, I've had pots a few years, seems to be a little worse.I went to my doctor and demanded tests instead of being ill, and my new doctors so much better!To start off shes giving me:full blood countselectrolytesinfection indicatorsinflmmation indicatorsthyroidvitamin b12 and folatecoeliac diseaserandom glucoselyme disease,Im so happy shes testing for Lyme after reading a lot of people having it, at least its something on my check list to say ive done.I know the tests not 100%, so how many times should i test for it? quite a tricky one imo.Then in 2 weeks, im off to see prof mathias in London autonomic neurologist who treats pots in the UK, thank god someone who knows what im talking about!! Just a big journey for me to make, get to the train station and then the train station in london it is a 1 min walk to him so not too bad?See what happens from there!Any recommendations for tests to request while im there? Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 9, 2013 Report Share Posted August 9, 2013 Awesome news Andy!! Hope the tests reveal some answers for you and that you get to feeling much better. Let us know. I don't have any test suggestions. Quote Link to comment Share on other sites More sharing options...
corina Posted August 9, 2013 Report Share Posted August 9, 2013 No suggestions from me either, sorry for that but best of luck in London! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 9, 2013 Report Share Posted August 9, 2013 Wow I'm so happy for you!!!! ♥ Ummn let me see....Blood MetanephrinesCatacholaminesTorso MriBrain Mri (chiari)Tilt tableStress testHeart ultrasoundGlucoseI really dont know.. These are great tests but Im no expert. You can always refer to the dinet home page http://dinet.org/how_is_pots_detected.htm Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 9, 2013 Report Share Posted August 9, 2013 Good for you! Since you are seeing a POTS specialist, he should know what test need to be run. Most teenagers according to research will out grow POTS. However, if you can think of any underlying problem that might be causing the POTS to be worse, you need to keep searching. My son is being checked for PANDAS. He has also been seen by an immunologist and he is having more testing done because of what test results revealed. Have you been on any medication to treat your POTS? Because my son never responded well to the medications after one year trial, that was the clue for our cardiologist to continue searching for other causes. The other clue was that my son would get sick and symptoms not really associated with POTS would become more severe after each illness. Hope you find the answers you need. Keep us posted and good luck with your next doctor's visit. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 10, 2013 Report Share Posted August 10, 2013 epi, norepi, and dopamine -supine (while laying quietly and still for 20 minutes at least) and then standing when tachycardic. Quote Link to comment Share on other sites More sharing options...
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