nooniegirl Posted January 14, 2010 Report Share Posted January 14, 2010 HiI am halfway through testing for suspected POTs and I was hoping to meet some people that have been diagnosed in the UK. I am having my tests done through Kings College Hospital Quote Link to comment Share on other sites More sharing options...
lauralulu Posted January 14, 2010 Report Share Posted January 14, 2010 Hi!There's a few UKers here who no doubt will introduce themselves. I'm in similar situation to you, not diagnosed yet, awaiting some tests, albeit through only my small, local hospital though so not sure how conclusive they'll be... we'll see.Good luck with your tests anyway, the people here are all very friendly and welcoming and you can learn a bunch! xx Quote Link to comment Share on other sites More sharing options...
flop Posted January 14, 2010 Report Share Posted January 14, 2010 Hi, welcome to DINET!I'm also from the UK. I was diagnosed 5 years ago by a cardiologist at my local district general hospital. I now also see Prof Christopher Mathias at the National Hospital for Neurology & Neurosurgery, Queen Square, London.I have over 5 years experience of being a POTS patient in the NHS. Please feel free to PM me with any questions.Flop Quote Link to comment Share on other sites More sharing options...
Griffin Posted January 16, 2010 Report Share Posted January 16, 2010 HiI'm in the UK too. See a heart consultant in London. Not officially diagnosed as POTS (I don't think he has heard of it) but with hypotension and tachycardia and had + tilt table test.I think it is hard to get diagnosed in the UK as it seems relatively unkown condition. My low blood pressure was considered wonderful by all doctors, and no one was prepared to see how awful it was to live with. My fast heart rate was treated as anxiety until a 24 hour monitor showed it wasn't (and it is fast even when asleep). I had to push and push and see different consultants until they took any of it seriously.Best of luck. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 17, 2010 Report Share Posted January 17, 2010 Hello and welcome.You can send a note to a member, persephone too. She has years of experience with finding good care in the UK and I have no question will save you some effort.tearose Quote Link to comment Share on other sites More sharing options...
sj75 Posted January 17, 2010 Report Share Posted January 17, 2010 I too am in the uk and under the care of the john radcliffe, they have taken nearly four years to get me a diagnosis as its just not something that seems to enter the radar in the uk unfortunately but my cardiologist is great and the hospital as a whole is brilliant. There is some great stuff being intitiated in the noth and the start of some support groups around the sheffiend area i believe. Quote Link to comment Share on other sites More sharing options...
persephone Posted January 17, 2010 Report Share Posted January 17, 2010 That's exciting- I see the JOhn Radcliffe too. Who are you under there?In reply to the original poster I was diagnosed 5 years ago and have experience of POTS treatment in England and Scotland. Quote Link to comment Share on other sites More sharing options...
lauralulu Posted January 17, 2010 Report Share Posted January 17, 2010 Really?? Support groups in Sheffield? I'm SO near there it's practically on my doorstep! If you know or hear anymore about this, please let me know!! Quote Link to comment Share on other sites More sharing options...
Janey Posted January 17, 2010 Report Share Posted January 17, 2010 I am in the UK, based in Oxford and under the care of Christopher Mathias at Queen's Square too!If you need any help with any of the other doctors associated with the condition (such as gastroenterologists, urologists etc who have experience with POTS patients, let me know!) Quote Link to comment Share on other sites More sharing options...
sj75 Posted January 18, 2010 Report Share Posted January 18, 2010 Im really excited to find others under the care of oxford, pots is so poorly understood over here its nice to come accross others being treated in the same county.I am speaking to the pots nurse specialist at sheffield this week and will try and find out some more info. Its too far away for me to attend but if it can help other sufferers thats great. Would love to see one started around oxford as that would be a real sign of progression here in the uk.x Quote Link to comment Share on other sites More sharing options...
lauralulu Posted January 18, 2010 Report Share Posted January 18, 2010 Would that be at the Hallamshire hospital? Good luck with the appointment, I hope you can get the answers and treatment you need, closer to home especially as I know how invaluable that must be! Quote Link to comment Share on other sites More sharing options...
nooniegirl Posted January 18, 2010 Author Report Share Posted January 18, 2010 Thanks for all the positive replies. I have today been wired up to a 7 day heart monitor. See the consultant on the 12th so fingers crossed they'll be some news Quote Link to comment Share on other sites More sharing options...
brownsea Posted January 18, 2010 Report Share Posted January 18, 2010 good luck with the monitor. x Quote Link to comment Share on other sites More sharing options...
lauralulu Posted January 18, 2010 Report Share Posted January 18, 2010 Good luck on the 12th! Hope you get answers and, more importantly, some treatment! Quote Link to comment Share on other sites More sharing options...
tanjarine Posted February 8, 2010 Report Share Posted February 8, 2010 Hi fellow Brits.I'm new to this forum however old to the symptoms which are prob pots. about to get the gp to refer me after been sent round the houses for yonks (I'm sure you know the score there). If any of you folks know of any autonomic/pots specialists in the east midlands...that you recommend - please please let me know asap. I'm seeing my new gp on thurs and it will help to be armed with specialists names...however am happy to go to london. (i've just been to the phychiatric multi discipline place for an assessment, however they want me to get checked for the autonomic stuff first). big thanks, in advanceWishing you all the bestTanjarine Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.