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Lavender90

Uk potsies what doctor do u see?

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I need some help my currant doctor is struggling with me i need new one or extra one to help him help me any help name number would be sooo great i dont no what else to do google few try get app but couldnt get though 

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The top dysautonomia specialist in the UK to my knowledge is Dr Matthias in London. I haven't seen him personally but I may do, if craniocervical instability/settling is excluded for me/ I need more supporting info from an autonomic specialist in order to release my pension / cannot get to see Dr Grubb (US, would be my number 1 choice if money no object and physically able to travel). Unfortunately he only practices privately. 

I have also seen Prof Newton in Newcastle where I went to get diagnosed, and UCLH in London where I went for further autonomic tests. Neither were able to offer me any treatment but to be fair I had already tried everything except methylphenidate and IV saline myself (I worked as a GP). 

I hope you manage to find somebody willing to try to help. Sometimes, a doctor who doesn't know much about the condition but cares & is willing to learn and try different things with you is worth far more than someone supposedly specializing in dysautonomia who isn't willing to listen or think outside the box if the first one or two meds don't help. 

B xxx

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Where are you in the UK? Have you looked at the list of doctors on the POTS UK site? My daughter has seen Dr. Jamie Fulton at Derriford in Plymouth. We liked him a lot. He's just come back from a 4 month leave, so I imagine he's quite backlogged. He's NHS and doesn't do private as far as I know. 

 

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thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk

 

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On 5/11/2019 at 3:29 PM, Lavender90 said:

thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk

 

How did you get on with Dr Gupta? Dr Newton diagnosed me but couldn't help with treatment, just suggested things I'd already tried. 

B xxx

 

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Prof Mathias is now retired even from private practise. 

I went to the autonomic clinic in London on the NHS for repeat testing and it's just the same treatments and advise.

Basically they tell you that you have it, try the treatments and if they don't work for you that's it. Sucks, but until the research shows a clear cut cause, then we will have to wait!

I hope this antibody research hurrys up, I want to try IVIG but they won't just give that out like candy :(! lol.

Luckily fludrocortisone is awesome for me, my BP is like 130/80-150/90 depending on position, mostly high when standing, none hyperadrenergic though. So they wanted me to reduce up, but I'm not it's the only thing keeping me going. Plus my bp was the same before it, which is hard to get them to believe haha.

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