Hi, I would like to hear from anyone who may have had a similar experience to mine. (Apologies if this is repeat of what others may have written but I have found it quite therapeutic to write).
I am a 36 year old female who began suffering strange symptoms during my first pregnancy 2 years ago (an IVF pregnancy as we never had any luck falling pregnant). Symptoms included migraine auras, double vision, other vision problems as well as general confusion (which I just put down to ‘mummy brain’). For example, one day I went to get in the elevator and couldn’t remember for 5 mins or so what floor my office was on. Very bizarre not to mention embarrassing.
During my pregnancy I tested positive for anti-cardiolipin antibodies and further investigations then also confirmed a positive test for lupus anticoagulant. No one specifically diagnosed APS at the time although I was then put under the head Obst. at the hospital so maybe it was suspected (??). The Obst. decided I needed to be induced given the positive antibodies results. The day before I was to be induced I had a vertigo attack which I had never had before. Very scary at the time as I was heavily pregnant. I mentioned it to the Obst. but it was put down to migraine. The next day I was lucky to give birth to a healthy baby boy.
I was then put on daily injections of heparin for 2 weeks as a precaution given my positive antibodies test. Within 3 days of giving birth I was struggling to breath and following a chest x-ray was diagnosed with Pneumonia and given antibiotics via IV (I am still not sure whether this pneumonia was APS related or not - my current Haem. says she doesn’t think it is related).
Over the next few months I continued to suffer vertigo attacks. I found the Hughes foundation website on Google when searching for info on antibodies and couldn't believe the similarity of my symptoms with those of APS sufferers. I printed the pages off and took them to my GP asking for a referral to a Haematologist. I could tell my GP thought I was crazy. He put my symptoms down to breastfeeding hormones (although I had finished breastfeeding a few months beforehand). I was also told I shouldn’t self diagnose via the internet. On my visit to the Haem. I was again warned of the dangers of self diagnosing on the internet. I was informed I did not have APS seeing as I had never suffered a miscarriage. It apparently did not matter that I had never fallen pregnant despite trying for a number of years. Funnily enough this was the same Haem. the Obst. had been consulting during my pregnancy.
Fast forward three months and I was admitted to hospital with a thrombotic event (clotting in my feet). CT/MRI also showed I had suffered a stroke. There was also evidence of around half a dozen previous TIAs. I was then quickly diagnosed with APS and have now been told I will be on warfarin for life and Plaquenil for an extended period (Rheum. suggested to the Haem. I go on Plaquenil even though I don’t have SLE??) The stroke affected my eyesight and general wellbeing for about a month but I feel as if I have almost made a complete recovery (90%). Although it concerns me that my stroke could have most likely been prevented with the right investigation and diagnosis I am thankful that someone ordered the initial CT and feel very lucky the stoke/TIAs were discovered.
I am now seeing a different Haem. who regularly consults both a Rheum. and Neurologist in relation to my care. We are thinking of trying for a second baby. I have been advised it would be classified as a high risk pregnancy.
I would like to hear from anyone with general words of advice and/or who has gone into a pregnancy knowing of their APS, the medical advice you received and the outcomes (good and bad). Also, for those with children have you had them tested for APS?
For those of you who have had stroke/TIA out of interest what INR level has been suggested? Mine is in the range of 2 to 3 but I seem to think much clearer when it is up towards 3 if that makes sense.