I have been extremely lucky in that I have had fantastic doctors to help with my diagnosis.
I first met Dr Rajiv Amersey MD MRCP http://www.drfoster.co.uk/Guides/ConsultantGuide/view.aspx?gmcno=3479388 who is a Consultant Cardiologist and Physician at Whipps Cross University Hospital, Holly House Hospital and Bart’s Hospital. He is a fantastic doctor and was very quick to spot the signs of POTS. He did not give me an immediate diagnosis as he wanted to eliminate all other conditions but I have never known a doctor to be so thorough and also kind.
After trials of various medications we decided that it might be time for me to see a specialist so I was referred to Professor Rodney Grahame CBE MD FRCP FACP http://www.ucl.ac.uk/medicine/bloomsbury-rheumatology/staff/rg.html who is a Consultant Rheumatologist/Honorary Professor at UCL in the Dept of Medicine. Professor Grahame is an expert in Marfans syndrome. Professor Grahame is semi retired now. He was a lovely man who spent a long time with me and finally concluded that I obtain an opinion from Professor Mathias who is an expert in POTS.
Professor Christopher J Mathias DPhil DSc FRCP FMedScihttp://www1.imperial.ac.uk/medicine/people/c.mathias/ works at both the Imperial College London (St Mary’s Hospital) and the National Hospital for Neurology and Neurosurgery & Institute of Neurology, University College London. Professor Mathias is a charming man whom immediately puts one at ease. He carried out various autonomic function tests and I am to be admitted into hospital at the end of October for more tests.
If anyone has any of the symptoms of either Marfans or POTS I would recommend that you seek out the advice of any of the above doctors.