I have had a pulmonary Embolism maybe 2 or 3 and was possibly diagnosed with APS as sero negative by Rheumatologist in my home town.
I was struggling with Brain Fog and not remembering people's faces so asked my GP if warfarin Haematologist would allow me to increase INR to 3-4.reply was absolutely not.
I asked my GP to refer me to London and with help from APS support group Kate i went to see Prof Beverley Hunt at the heamatology/haemophilia centre at St Thomas, who has dealt with me in a very professional way. My first tests were negative and I went back for a repeat and was told that i would be discharged after that 2nd visit. Then I got a phone call telling me that the tests were now positive and to reurn to clinic. That's when I first saw Prof Hunt who saw the livedo and the arthritis in hands and and feet. She increased the Warfarin to 3-4 and sent me for memory tests at Guys, and prescribed Plaquenil. I now see Dr Breen who is part of Prof Hunts team, who communicates with consultant in Home town and she is keeping me on the straight and narrow for Cerebral Aps.
I just thank God I have been seen and supported by a great Team who listen respond and communicate.
My home team Warfarin Clinic say that there is no-one like me and they continue to treat people at an INR of 2-3. I can't believe that they are dealing with people's lives like that in such an appalling negative way
I thank God that my GP allowed me to be referred to London and my APS is being dealt with appropriately. I just feel sorry for all those in my home town who aren't
I recently saw the named APS Haematologist in my home town who wanted to change me to the new medication even though London says NO I must remain on Warfarin.
How can this person be named as the APS consultant when they are not following APS protocol
I do hope that somehow something may change for the people of my home town that they may receive the correct training both in the hospital and community. But I am just a minnow in a pond full of big fish. I cannot make a difference.
Dr Breen tells me that they are willing to go and do training but I have no influence in my home town