Hi - I have recently been given a diagnosis of APS after two positive blood tests for the Lupus Anticoagulent - one as part of pre-surgery assessment and the next 4 months later. I have was referred to the haematology dept at my local hospital. I had a 10 min consultation with a registrar who asked a series of questions had I had clots, miscarriages, heart problems, did I drink or smoke when I answered no to all I was told that I didn't require any treatment and discharged.
Around 4 years ago I had a 7 month period when I was experienced extreme fatigue, dizziness, brain fog - I was tested for various things including thyroid, diabetes all negative - I never did find out the course of the symptoms but gradually things improved, although from time to time I have experienced what feels like mini attacks of the symptoms for shorter periods. For several years I have also experienced joint pain especially in my hands and feet - my father has RA so have had several tests for that but all come back negative, I have slightly high inflamation markers, but GP has said that is probably due to a replacement hip I had earlier this year. For the last 6 months I have also had tingling in my hands and sometimes feet. At my consultation I explained all these symptoms and said I wondered whether they were Lupus related - the Dr said she didn't know much about that - when pushed she said I could go to see a rheumatologist if I wanted and she would include that in my letter back to my GP but I would need to go back to my GP myself for a referral. I have an appointment next with my GP and am going to ask to get referred to a rheumatologist - hopefully I will get some answers.
Just as I was about to leave a nurse who was in the room handed the Dr a leaflet about Hughes Syndrome to give to me - when I got home and read the symptoms I was or had experienced 6 out 7 of the low grade symptoms listed.
As I have been discharged with no treatment I am unsure whether this is something I need to advise when booking travel insurance, life assurance etc - obviously I don't want to have to unless needed as I know it could increase premiums significantly. With regards to the haematology side of things is this something that could change, get worse - as I have been discharged without treatment I am a little worried that the condition isn't going to get monitored. While I don't want to have any labels I just would like to be taken seriously and not made to feel like I am a hypochondriac.
Sorry for the rambling post, but it would be great to hear from anyone else who has had similar experiences.