An aps newbie: Aps patients and their relationships with medical professionals
I've recently been diagnosed with primary aps. The diagnosis is not a surprise - here's a brief overview of events that have led to it:
- 5 miscarriages, 4 consecutive following one successful pregnancy in the space of 2.5 yrs
- experienced blood clotting within the uterus during my daughters pregnancy, bleeding for the first 15 weeks
- the premature birth of my daughter (32 weeks gestation) and born with a congenital abnormality called TOF's (tracheo oesophageal fistula and atresia)
I have always suffered with pins and needles, poor circulation, word muddling, insomnia etc and accepted this as part of 'my' normal. I also suffer with moderate psoriasis (approx 20% coverage).
Whilst the condition is daunting, what worries me more is the lack of understanding and sympathy within the medical profession. From personal experience, my previous doctor was extremely dismissive of the miscarriages, regarding it as "bad luck". He simply advised taking folic acid and suggested that after 6 or 7 miscarriages there maybe cause for investigation. By miscarriage 2, I pleaded with him to look into it. He didn't. I went to him with the issue of stiff hands and knees, believing it could be the onset of psoriatic Arthritis and he did request testing. When inflammation couldn't be found, I was again dismissed despite the continuation of symptoms. By miscarriage 4, I returned to the doctors office and asked the question "I already suffer with one auto-immune condition, is it completely inconceivable that I don't have another?". Having then been told he had already tested me for auto-immune conditons, the answer was "unlikely", I resorted to more begging, talked about my daughters pregnancy (again) and thankfully he relented.
The Internet, this forum is littered with similar experiences. Books on aps also suggest that finding knowledgable, sympathetic medical professionals who understand the complexities of this condition is challenging.
With this being the case, how do people manage? How do you know who to trust? It concerns me that getting a diagnosis is a fight, finding specialists to listen and believe you is a fight, further treatment a fight and can thus have devastating consequences.
Whilst I accept the importance of being an 'informed patient', it would be nice to hear that my first impressions are a little askew and that it is indeed not as difficult as it seems or maybe someone can shed some light on the realities of living with aps and relationships with doctors/specialists.
Thank you for reading