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Question For Those Diagnosed In Uk


lauralulu
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Just wondering how you went about it?

I am seeing a cardiologist on the 29th, I was referred by my GP. Not sure what will happen, whether he will even know about POTS, guess I'll just have to see...

A few people have told me they got diagnsoed by Professor Mathias in London. But that he has a really long waiting list on the NHS. Ideally of course I'd like to get dx asap. I'm considering going to him privately if things don't work out with my cardio, but not sure how much it would cost- can anyone advise? You can PM me if preferred, I'd just appreciate some advice as I am readying a 'plan of action' to cover all bases, as I am well prepared for the frustration (once again) of not being taken seriously or being sent away because the person in question has little knowledge of ANS issues and thus can't diagnose me...

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Have you checked out www.stars.org.uk.

Email trudie@stars.org.uk

She is the CEO. They have information sheets on POTS and she will be able to give you a list of UK specialists who are good at treating POTS, so you may not haave to go all the way to London.

when I saw Prof it was ?295 for the consultation and I had a tilt test and bp test that cost almost ?1,000.

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i went to kings in london and had an autonomic test with was on the nhs. although previous to this i got so poorly i was treated privately, they suspected and pots and put me on the midodrine, beta blockers etc, that was after two years of constantly going to the doctors with no joy.

good luck

emma.

xxx

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Laura: essential reading for you- http://www.stars.org.uk/files/file/pots-do...perspective.pdf

This was written by a Consultant from Newcastle. She could be the person you need to see- Newcastle is presumably nearer you in Yorkshire than London? She is very clued up. Ask trudie@stars.org.uk for contact details!

hope this helps.

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