I was diagnosed with APS at St Mary's, Paddington in 1993/94 after suffering 3 concurrent miscarriages, I went on to have a further 2 as my doctors at the time did not put me on the required medication early enough and wanted to wait for me to have an appointment at St Mary's. As I already had 1 child I made the decision not to try for any more children and put APS and my miscarriages to the back of my mind.
I was always curious as to why I could carry a child to full term without any complications, then 'suddenly' have problems and be diagnosed with APS out of nowhere. The internet now makes it easy for us to find answers to questions that long ago would have been left unanswered so a few months ago I remembered to finally do some research on APS.
I was stunned and having been living in a mild state of panic ever since. I have never been informed of the complications, various symptoms or potential life-saving treatment of APS. I went immediately to see my doctor, who after much discussion agreed to refer me to a haematologist... I am still waiting for an appointment - does anyone know how long this should take? I will be phoning the doctor tomorrow to chase progress.
In the years from 1993/94 my father, fit and healthy, died from a PE/heart attack at the age of 60, my cousin died in February this year, aged 50, from a PE and my 9 year old nephew has been diagnosed with epilepsy, despite there being no history on either side of the family. Has a genetic link been proven? If yes then I see those 2 deaths as being preventable and will hopefully be able to explain why my nephew has developed epilepsy.
I'm really angry that at no time over the last 18 years have I been appraoched or advised by the medical profession to have further tests to prevent my APS developing or to help manage it. I even went for blood tests about 10 years after being diagnosed because I felt so exhausted all the time but this was put down to working full time and bringing up a family.
My symptoms are as follows, but like many of us, I put these down to all part of being me and have never attributed them to APS:
1. Brain fog
2. Words muddled or forgotten mid way through a sentence
5. Aching and pains in ankles and feet - I sometimes can't walk on them because they hurt so much
6. Pains in hands
7. Heavy arms
8. Restless legs
9. Restless body, can't sit still
10. Skin rashes - face and neck mainly
11. Severe allergic reaction to sun
12. Blotchy skin
13. Problems with balance - feel like I'm falling off my shoes
14. Problems with balance - fall, trip or walk in to things on a regular basis
15. Feeling mentally and physically exhausted.