My Story my road (shortened version) to diagnosis

As far back as I can remember from 18 onwards I think my first symptom was stomach pain

In 1991 I became pregnant for the first time. I struggled with the pregnancy and I was in immense pain and admitted to hospital at about 7 months nothing conclusive was found and I was discharged to spend the remainder of my pregnancy in pain (I believe my body was struggling to carry the baby because of Hughes syndrome) I went on to deliver my daughter 3 weeks early smallish but healthy. Looking back at this time I was very forgetful and tired but I just put this down to being a new mum. I also continued to suffer with stomach pains. Despite trying to conceive it took me another seven years to fall pregnant as my periods were very irregular I now believe I had probably had some very early miscarriages . During my second pregnancy I was extremely ill tired and in pain and eventually gave birth two weeks late to a little boy. After the birth I was really ill I had no energy and was getting a lot of stomach pain which I put down to post natal recovery. When my son was 3 weeks old I started vomiting and I thought I had food poisoning and to cut a long story short it did not stop for a long time. I was eventually admitted to hospital and after a few weeks of test I was taken down to surgery as a CT scan had shown a swelling in my tummy. I ended up in ICU as when they had cut me open they found my bowel had burst (I have now been told I had a blood clot to the bowel which cut of circulation killing the tissue and therefore breaking/bursting). The incident was put down as a mystery as I had had had a’’normal’’ birth. After being discharged from my bowel op I was promptly admitted again with a suspected pulminary embolism given heparin injections and a day later I had a scan but as the scan was inconclusive they discharged me.. In 2001 I returned from a holiday abroad and I had a pain in my leg as I had flown I thought it was wise to get it checked out at the doctors I had blood tests and was not contacted the pain got better so I forgot all about it (I later found out that the Lupus anticoagulant had come back abnormal and I should have been retested – this was probably when I started to clot of my leg artery). Since my op I had been up and down to the hospital seeing gastro consultants and going to a&e with stomach pain and being admitted for a couple of days at a time but nothing was ever conclusive. In 2002 I had my Gall bladder out and there were complications so I had to have open surgery instead of keyhole. After surgery the consultant said to me your blood was acting weird which I of course took no notice of at the time. Another time I was admitted to hospital I was told that my portal vein had thrombosed but as my blood had re routed itself it did not matter – if only I had know or been wise enough I would have asked them to find out why. By this time I was also suffering from extreme fatigue and brain fog at the time and didn’t have the sense or energy to deal with these matters being ill was hard enough. Crunch time came in 2008 I started getting leg pain and I was in agony my doctor referred me to a vascular consultant and he was the first person to pick up that there was something wrong with my blood( as well as having bilateral long saphenous vein thrombosis and bilateral popliteal artery occlusion) and referred me to a haematologist. When I saw the haematologist she was not sure what the problem was but admitted me to hospital to run a series of tests to diagnose me. Imagine my surprise when a arteriogram showed an occluded right renal artery with no renal function in that kidney and occlusions of celiac and superior mesenteric arteries and a brain scan showed high signal lesions these tests along with blood test finally gave me a diagnosis of Antiphospholipid syndrome. Since being diagnosed I am being coagulated and although I should have no more clots symptoms are developing and I have since been diagnosed with thoracic outlet syndrome, stiffness, fatigue, brain fog, memory problems and mobility problems.

6 Replies

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  • Thanks for a most informative blog, I am sure other people will read this and recognize parts of their own history int this - all our blogs combined can only help to educate. Best wishes MaryF

  • Thanks Mary if only I had known how things were going to work out I would have documented events in more detail.

  • As Mary have said this was a great blog thank you for sharing TJ it is good to share so others can relate .

    paddy

  • If my story helps anyone I'm happy ... the lessons i learnt on my road to diagnosis is believe in yourself as I used to doubt the way i felt when doctors could find nothing conclusive and press for answers ...

  • Hi

    I can only add to what others have said. I'm sorry you had the awful journey to diagnosis. I'm sure lots of us can relate to it.

    Another tough lady and a survivor!

    Glad you feelin better with anticoagulation. I know about doubting myself too, actually has helped so much on the forum and meeting others with aps.

    I hope you feeling well today.

    Take care gentle hugs sheena xxxxx :-) :-) :-)

  • Hi TJ

    U are amazing. The stomach pains and bowel op struck a cord with me cos I have been hospitalised a number of times with stomach pains and had a couple of exploratory ops for that to be told it must be due to adhesions and I to had major bowel surgery a year after childbirth when my bowel decided to try macrame! I had never considered that any of this might have a link to APS!

    Keep warm and well, honey

    Love Sharon x

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