Yesterday I had my specialist appointment, I first found this forum in November and all you lovely people gave me the courage to ask my GP to refer me to haematology.
I saw a really lovely gentleman who listened to me very carefully and wrote everything down. We discussed my previous negative results and the fact that my only clotting incidents were pregnancy provoked. He feels that in spite of this it is possible that I could be seronegative APS or Lupus. As a lot of the more day to symptoms are similar. The multiple loss of pregnancy and the very premature birth of my beautiful daughter also contribute to this decision.
However, He said he was unable to do the extra tests that can be done to diagnose seronegative APS. So he is referring me to a Professor Beverly Hunt in London. This is making me quite anxious as just an Appointment at Derriford was a massive thing for me and my concentration and energy levels. Leaving Cornwall to travel to London is really daunting.
He has redone all my blood tests ready for the referral. He really was wonderful, I am so glad I saw him.
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pinkyandperky
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I understand. However, you are one of the lucky patients who have a referral to an expert.
Many patients, especially women, have had to wait many, many years to be taken seriously!
A diagnosis takes time. It isn’t a matter of a label or blood tests. It’s based on clinical symptoms. This doesn’t mean your symptoms won’t be treated, but being given a wrong diagnosis can be devastating.
The good news is that you will get a diagnosis and your symptoms will be treated so you can lead a fulfilling life.
Please take someone with you because it is overwhelming! Most of us have been through what you are experiencing, so we do understand!
Whenever you need to talk, we are here. Don’t let people tell you to “be positive!” It’s very normal to feel what you are feeling!
*waving at you from Devon* 🙂 It's daunting but you've been given great advice above. I've had ok responses from my consultants at a hospital with no aps expert but a year down the line I'm thinking about needing a specialist. It can be a long journey and all together more tiring with prolonged appointments not with an expert even if it's closer to you. If that makes sense. Take the offer of the referral and plan ahead. Good luck x
I see Prof Hunt and she is very good, I was Seronegative to start with, but not any longer, same for my daughter and son. She also helped me through my two last pregnancies, which were a very long time ago. Your appointment will be fine, try and write out your medical history in bullet points and and any significant diseases in your family etc. MaryF
It's worth the trip to see someone with knowledge who can help you and listen to you.I travel from north east Lincolnshire to London each year.I combine it this year with 2 weeks in Cornwall so think of it as an adventure and take in the sights. On my way to Penzance this morning.Take someone with you and go by train as we do
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Appointment at Thomas'.
Discharged from Lupus unit !
Maybe the hematologist thinks I'm crazy? Appointment did not go well.
How do you know if you APS specialist is actually that?
GP reluctant to refer.
